I sat there in a bit of disbelief... I am the girl who really pays attention to what she eats... who works out regularly... who talks to others about the importance of health & fitness.
How I did develop a disease that zaps my energy, causes mental fog, moodiness, memory loss, bloating, insomnia (the list goes on! haha Read more about my diagnosis here)
The "Five Stages of Gluten Grief" were very real for me
- Denial - No way! This doesn't happen to me- I eat healthy foods! GF is a marketing ploy
- Anger & Overwhelm - This is bull crap and Gluten Free Foods suck butt. I don't even know where to start. This sucks.
- Rationalizing - What if I just eat ONE GF meal a day? What's the harm? It's less than I was eating before.
- Depression - My life is never going to be the same. Going out to eat is going to be awful- I'm just going to stay home forever.
- Acceptance - Ok, Im hungry. I better figure this out.
I am not a Gluten Free expert. In fact, I just got started 8 weeks ago...but here's what I can tell you.
- That massive feeling of overwhelm will fade and go away.
- You must become the master of your well-being. That means learning why it's good to ditch the gluten, paying attention to how foods make you feel, and adjusting your diet accordingly.
- Once you cut out gluten, you will wonder why it took you so long because you feel AMAZING
Getting Started:
Get Your Education:
My first week Gluten Free was a joke. I found reasons why it was ok to eat gluten ...until I did a little reading....Several studies show a strong link between AITD (both Hashimoto’s and Graves’) and gluten intolerance.What explains the connection? It’s a case of mistaken identity. The molecular structure of gliadin, the protein portion of gluten, closely resembles that of the thyroid gland. When gliadin breaches the protective barrier of the gut, and enters the bloodstream, the immune system tags it for destruction. These antibodies to gliadin also cause the body to attack thyroid tissue. This means if you have AITD and you eat foods containing gluten, your immune system will attack your thyroidYIKES! I don't want my body to attack itself!
Even worse, the immune response to gluten can last up to 6 months each time you eat it. This explains why it is critical to eliminate gluten completely from your diet if you have AITD. There’s no “80/20″ rule when it comes to gluten. Being “mostly” gluten-free isn’t going to cut it. If you’re gluten intolerant, you have to be 100% gluten-free to prevent immune destruction of your thyroid. (source http://chriskresser.com/)
Remember WHY you are doing this:
You are going to be tested and tempted. It's not going to be easy. In fact, it can be downright tough.The first time you go out to eat with family or friends... the bread basket is on the table, someone orders your favorite (gluten laden dish), and you really just want to forget your body is it's own worst enemy lol
After experiencing "life after gluten" I will tell you...it's not even tempting to go back. Bloating, causes, stomach cramps and pain...not worth it! Trouble losing weight...trouble remembering things...trouble with anxiety, depression, mood swings...Not worth it.
And what scares me the most...remember how I shared that your immune system will attack your thyroid because it mistakes it for gluten? If that continues to happen, then eventually your thyroid will be so damaged that it stops functioning..and you will have to be on medication for the rest of your life.
That's more than enough reason to pass on the bread!
Quit Gluten Cold Turkey
When I started P90X, one thing that really helped me was to clear any temptation out of the house. Out of sight, out of mind.
Clear out your fridge, pantry, cabinets or anywhere gluten might be lurking. Give the food to friends or neighbors.
Create a CLEAN SLATE in your kitchen!
Read, Research and Reward!
Purchase a book (or two) to read up on Gluten and a cookbook to give you ideas! I don't know what I would do with my cookbooksI started with The Autoimmune Paleo Cookbook to focus on eliminating triggers from my diet and healing my body. I love this book because she gives recipes AND two months of meal plans
The Autoimmune Paleo Cookbook: An Allergen-Free Approach to Managing Chronic Illness
Before you go out to eat, Google is your friend! Research the restaurants and menu!
Not every server will be knowledgeable about gluten free options (although many restaurants have now Gluten Free menus)
Here is an awesome resource with over 200 restaurants!
Before you go out to eat, Google is your friend! Research the restaurants and menu!
Not every server will be knowledgeable about gluten free options (although many restaurants have now Gluten Free menus)
Here is an awesome resource with over 200 restaurants!
Reward yourself with a fun and delicious gluten free snack like these: Coconut Macaroons
Experiment & have fun Creating NEW favorites that are GF friendly!
There are so many options with gluten free breads, rice noodles, zucchini pasta, the options are endless!I did have to get used to new tastes. Cauliflower pizza doesn't taste like traditional pizza...but omgosh guys..it's amazing! Recipe: Best Cauliflower Pizza Ever
Hmm, that looks Pinteresting!
Pinterest is LITERALLY an endless source of Paleo and gluten-free recipes.Pin recipes that sound appealing and don't be afraid to branch out. You might surprise yourself.
Shop Around: What is the best grocery store to fit your needs?
Your local grocery stores might be different. Even stores in the same chain but different locations might be more accommodating. We have a store that is about 1 mile away- which is great for the basics. But I usually end up driving 15-20 min for my weekly shopping. Almost every grocery store will have SOME gluten-free items. But I like to go where I find the best selection.
There is no shame in your Google game
I can't even tell you how many times I have googled, "Is there gluten in _____?"
This stuff is confusing and when you are just starting out...it kinda feels like... well what the heck CAN I eat???
But over time, you will adjust (I pinky swear). You have an advantage...gluten free information and options are becoming more available and prevalent every day.
I invite you to join my Gluten Free group on Facebook where we are all learning, sharing and on this journey together!
I promise if you keep it simple, keep reading and learning, and continue to have an overmind, you can become completely Gluten Free without buying a ticket on the Overwhelm train lolThis stuff is confusing and when you are just starting out...it kinda feels like... well what the heck CAN I eat???
But over time, you will adjust (I pinky swear). You have an advantage...gluten free information and options are becoming more available and prevalent every day.
I invite you to join my Gluten Free group on Facebook where we are all learning, sharing and on this journey together!
For more info, visit my Thyroid Page
I was just diagnosed with Hashimotos, and it has been really tough for me because none of my doctors seem to know what to do next other than put me on levothyroxine. So I have turned to doing some research on my own. I have read “The Root Cause” by Isabella Wentz and have reviewed various thyroid studies, as well as spent nights reading personal blogs now that my semester is over...
ReplyDeleteI have also started working closely with a chiropractor/applied kinesiology practitioner to begin to sort out my health more holistically. Everything that I have read about Hashimotos (including clinical studies, and personal blogs) leads me to believe that my doctor should be telling me to try to go gluten free... but no suggestions are being made. I am also frustrated because my endocrinologist seems hesitant to help me with tips for managing my symptoms other than putting me on levothyroxine.
I know that I can start to feel better, but not by just taking a pill… Did you (or any of your readers) have a similar experience when you were ‘diagnosed” and to you have any suggestions for how to discuss options with my doctors?
LOOK INTO CYTOMEL ITS GOOD FOR HELPING BALANCE T3
DeleteMy Endocrinologist is a college professor. So like, when he's not seeing patients, he's very literally teaching other doctors to do what he does. And STILL, it took me YEARS of going "Are you SURE I'm not supposed to be gluten free, doc?" and he shut me down, "No. I don't believe in that research, I don't think it's necessary for Hashimoto's patients to be gluten free." It took two things - me going to my primary complaining of anxiety, and that doctor testing my inflammation markers. Those two things, and their results, and my doc was practically demanding I go gluten free. Go back to your PCP. Start over. Endocrinologists are a weird lot, sometimes you really have to push 'em.
DeleteHi, I too am heading down the same road as you. My endocrine doc has put me on the lowest dose synthroid. And says I have Hashimoto’s. My antibodies are so high that there’s no reading. >900. I’m stuck with finding out info to try to reverse or at least reduce those antibodies, but the mystery is WHATS MAKING THEM PRODUCE IN THE FIRST PLACE? I do have a couple swollen joints and arthritis all contributing to the fact that I have an autoimmune dysfunction,but WHAT IS CAUSING THIS? So I’m going to try to be gluten free and I’m put off by the boxed brands. I don’t know what’s in them. I need healthy and pure ingredients if I’m going to make this drastic change. It better count and it better be quick. I’ll know by my next blood test in 3 months.
DeleteYou should also try Medical Medium books by Anthony William. He's amazing!
DeleteGreat post and thank you for sharing your knowledge! I've recently been diagnosed as insulin-resistant and suffer from many of the symptoms for PCOS. I've read that going gluten-free is a huge help in reducing the symptoms and your post helps a lot. Thank you for the cookbook recommendations as well! :D
ReplyDeleteThanks for sharing your knowledge! I've been diagnosed as insulin-resistant and suffer from many of the symptoms of PCOS. I've read that going gluten-free is one of the best ways to help reduce symptoms and I was wondering how to go about it. I really appreciate the cookbook recommendation as well. :)
ReplyDeleteLove this! Just diagnosed with Hashi's after 19 years of being hypothyroid. This is our first week going gluten free and it is very intimidating.
ReplyDeleteThanks for all the info ,
ReplyDeleteShlee I feel for you girl. Sounds like you no more than your doctor about your disease. Smart girl!
I had a similar experience actually still having it since Sept 2014 I had a 0.033 TSH and my PCP who managed my hypo for 25 yrs was on medical leave so I went to an Endo she had sent me to once. Big mistake.
This lady changed my meds every 3 weeks . I got so sick and lost 27 lbs in 3 weeks ,started losing clumps of hair, had anxiety ,started getting inflammation on my scalp. I went to 2 Derms.. The first one was correct about the hair loss .She said it was from the stress on my body from the med changes.and all kinds of issues. The Endo had me hyperthyroid. But she kept insisting the symptoms were not from the meds. So in January I changed to a new Endo he left me on exactly what she had me on. As soon as my PCP came back IN Feb and I told her I put myself back on my old .125 I had taken for 25 years. So for 4 months I lost the symptoms, but felt miserable. So she ran an TSH 0.017 and a TPO it was suppose to be 0-66 for normal range mine was 300.
So she dropped my meds and I went to my 3rd Endo who said after I brought it up "oh yeah you have a disease called Hashis."That was all she said expect that her TPO was high. .All I could think of was she was not symptomatic .She gave me no information at all about Hashis she acted like I had a cold! It's funny,but I have come to expect it from doctors anymore so I know if they act that way I will do my own research or won't be back.(.She did apologize for her partner and all the other doctors for what they did to me previously. At least someone owned up to it). So I did get to stay on the levo I do not like synthroid for me.
Last Februrary I made an apt with an supposedly good Endo for this Sept...I am keeping that apt and returning to the last Endo again..Maybe between 11 doctors in 12 months they can get it right? Iam still having symptoms,but I quess they are better than before ...thanks to me switching my meds(with my doctor's approval),
Sorry this is so long .but it is the first time I have discussed my disease with people who actually understand what it means.
Your suggestions are so helpful.I sure appreciate the forum .Also I have not tried the gluten-free diet yet.
I will read The Root Cause along with whatever else I can get my hands on..
The best thing to do I believe is be proactive in your own care(which you all all are doing).and doctors do not always listen(I think maybe their hands are tied with insurances) or who knows I am trying to be diplomatic here, but It's been my experience so I keep going until I find the right one. Oh and I pray a lot..
I will check back and if I find anything new I will report back. Take Care and Hang In there, Thanks for the support you have given me!
Prayers and Blessings.
Wow! I'm really surprised I found such a fairly new blog post with even newer comments! All in this year!
ReplyDeleteIt's been a year since I was diagnosed with Hashimoto's and ever since, I didn't really think too much about it. I always thought that a lot of the symptoms I was having was due to my lifestyle: I was a full-time student who worked a part-time night job, so obviously this threw off a "normal" eating and sleeping schedule. I was ALWAYS tired and I never thought twice about eating healthier foods or, honestly, even exercising. Well, I've quit that job and I've graduated and I'm still sitting here totally exhausted among all the other symptoms. The doc recently upped my levothyroxine dose. However, I really think that what prompted me the most of looking into hypothyroidism diets is that I've gained 20 pounds, if not more, in the past year. So the research began and I ran across the gluten-free diet and it took me by total surprise. "You mean gluten could be effecting my thyroid!? What!? Nobody told me this!!" As you've described in your blog, it's in EVERYTHING I eat! So, yea, the transition is going to be interesting...
I truly enjoyed reading your blog!! :)
Gluten is what started my thyroid problem and irritable bowel syndrome. It's an autoimmune disease.
DeleteWow! I'm really surprised I found such a fairly new blog post with even newer comments! All in this year!
ReplyDeleteIt's been a year since I was diagnosed with Hashimoto's and ever since, I didn't really think too much about it. I always thought that a lot of the symptoms I was having was due to my lifestyle: I was a full-time student who worked a part-time night job, so obviously this threw off a "normal" eating and sleeping schedule. I was ALWAYS tired and I never thought twice about eating healthier foods or, honestly, even exercising. Well, I've quit that job and I've graduated and I'm still sitting here totally exhausted among all the other symptoms. The doc recently upped my levothyroxine dose. However, I really think that what prompted me the most of looking into hypothyroidism diets is that I've gained 20 pounds, if not more, in the past year. So the research began and I ran across the gluten-free diet and it took me by total surprise. "You mean gluten could be effecting my thyroid!? What!? Nobody told me this!!" As you've described in your blog, it's in EVERYTHING I eat! So, yea, the transition is going to be interesting...
I truly enjoyed reading your blog!! :)
Wow! I'm really surprised I found such a fairly new blog post with even newer comments! All in this year!
ReplyDeleteIt's been a year since I was diagnosed with Hashimoto's and ever since, I didn't really think too much about it. I always thought that a lot of the symptoms I was having was due to my lifestyle: I was a full-time student who worked a part-time night job, so obviously this threw off a "normal" eating and sleeping schedule. I was ALWAYS tired and I never thought twice about eating healthier foods or, honestly, even exercising. Well, I've quit that job and I've graduated and I'm still sitting here totally exhausted among all the other symptoms. The doc recently upped my levothyroxine dose. However, I really think that what prompted me the most of looking into hypothyroidism diets is that I've gained 20 pounds, if not more, in the past year. So the research began and I ran across the gluten-free diet and it took me by total surprise. "You mean gluten could be effecting my thyroid!? What!? Nobody told me this!!" As you've described in your blog, it's in EVERYTHING I eat! So, yea, the transition is going to be interesting...
I truly enjoyed reading your blog!! :)
I've been voluntarily GF for over two years. Did it originally to lose weight (that totally works), but there have been so many other rewards. I had a bad knee that flared up periodically and caused me to limp for several weeks until it healed. I wasn't ready for surgery and wouldn't take prescription pain killers. About 45 days into GF, I was carrying in a 25 lb. bag of dog food when it started to rain. I ran up the porch steps, into the house and dropped the bag. Then it hit me..I RAN up the steps..what?? With a 25 lb weight on my shoulder, too! No pain. No joint weakness. Prior to that, the knee flared up every few months. That was over two years ago and not a pain out of that knee since. I've dieted off/on my entire adult life. Since going GF, my appetite is suddenly and without any effort on my part, under control. When I'm eating a meal and reach the point where I am no longer hungry, I stop eating. Automatically, without even thinking about it. At that point, I have no interest in eating one more bite. This from a lifelong 'plate cleaner'. Instead of planning my next meal or snack in my head incessantly, I often forget to eat at normal meal times. It is no longer the center of my existence. A meal is what it should have been all along - something necessary for proper nutrition - and nothing more. Not a cure for boredom, not a celebration (family holiday meals notwithstanding), not a cure for depression, not a habit - it's just a simple meal. The importance of food is in appropriate perspective without one minute of effort, thinking or work on my part. I will never voluntarily return to eating wheat. My life is so much better without it. The initial adjustment is a challenge, but once you're through the first 3-4 weeks, it becomes second nature. Information to help select food, recipes, groceries is readily available. I frequently make GF contributions for family or potluck meals. No one ever notices. When I tell people they eaten a delicious GF entree, they don't believe me. I am a GF evangelist. I'll talk to anyone anywhere about the benefits. I have no self restraint normally and I am as self indulgent as they come. If I can do this, literally anyone can who wants to. Over the course of 2 1/2 years, I have lost 45-48 pounds without doing anything other than cutting out gluten. I eat ice cream, Snickers - all my favorites whenever I want. The catch is that I don't want them very often anymore. It's a natural, organic path to be able to eat whenever you want, whatever you want (except gluten) and as much as you want. Once your body adjusts, your appetite is no longer in control of your life.
ReplyDeleteI was diagnosed with Hashimoto's several years. My alternative doc told me to take Lemon Balm and Ginger. I moved and no longer see that doctor so had to do more research on my own. I've been "almost" gluten free for a couple years. Since I was never symptomatic - and since traditional MDs don't believe in the extensive testing required - it's hard for me to say if it's helping my thyroid but it's definitely eliminated all the gas and bloating associated with gluten.
ReplyDeleteI have Celiac Disease, so am also on a gluten-free diet. I want to add some information a lot of people don't realize. Many of those gluten free baked goods books and recipes use tapioca and other starches in place of gluten. Starches convert to glucose (sugar!) in the body, so those added starches are just added sugar and those gluten-free recipes are a huge sugar load on the body. It's no wonder that many people who can't eat gluten also suffer from diabetes!
ReplyDeleteAnything that needs yeast needs gluten or some sort of starchy substitute, so eliminate or severely limit these items. Items that don't need to rise a lot like cookies and brownies do not need a lot of starchy substitutes. I simply substitute brown rice flour for the flour in the Nestle Tollhoues cookie recipe, for example. They can fall apart a bit if not handled carefully, but they are still delicious and not as high a sugar load than if you use the all purpose flour alternatives that are full of starches. There are even recipes that use avocado or black beans instead of any kind of flour for brownies. I hate avocado, but I love avocado brownies!
TabiKate I've been suffering from knee pain as well!! I could not find a good reason for my right knee hurting so badly, and self diagnosed myself with Quadracep Tendonitis. I then somehow came across an article online about the correlation between Hashimoto's and tendonitis, so I went to my doctor and got an official diagnosis of quadracep tendonitis AND the bloodwork for Hashimoto's. I've known for about 4 years that I have hypothroidism, but now I know it is because of my Hashimoto's. I briefly went GF for 3 weeks on order of the doctor and felt SO much better in my knee. But then I saw my actual doctor and she wants me to get the Celiacs biopsy (I had the blood test last year but it was negative, which I've heard can happen). So, now I'm back to gluten and I feel horrible. Knee pain is back, I feel hungover all the time....I cannot wait for the biopsy in a couple of months! Regardless of an official Celiac's diagnosis I am going GF after the biopsy (for me, and for the Hashimoto's).
ReplyDeleteI've also come across the interesting fact that those who are undiagnosed Celiacs have a higher likelihood of developing other autoimmune diseases (such as Hashi's). I wish conventional medicine would wake up to all the "alternative" research out there!
Cassie, thanks for the advice on the starches turning to glucose. I'll have to be careful so as to not also develop diabetes.
I found your blog while searching for gluten free help because my 15 yo son was just diagnosed with celiac . I found it interesting though because you said you were diagnosed with Hashimoto's and your doctor told you to avoid gluten. I have had thyroid disease for 17 yrs and was just finally told by my endo that I have Hashimito's (no mention of going gluten free) while trying to get my tsh levels where they should be. I have been complaining about increased symptoms for the last several yrs. My dr. is currently ordering more bloodwork for adrenal insufficiency. My husband and I had both already been thinking about going gf before our sons diagnosis but after reading your experiences (your symptom list could be mine with the addition of sometimes severe joint and muscle pain) I am convinced I need to try it.
ReplyDeleteMy doctor just told me she wanted me to go gluten free to see if it would affect my abnormally low platelet count. I'm going to be honest, I don't believe it can have any possible effect but I'm doing it to prove her wrong. :P Totally legit reason right? Anyhow thanks for the encouragement. I also talked to a midwife I used with my second pregnancy as she has Celiac and she was super encouraging when I realized all the things I CAN have. I've gone on the Candida diet before and that felt far more restrictive than this sounds. Maybe I can manage to do it. If I know for sure it would help I wouldn't feel so irritated but I hate that so many times over the years a diet has been recommended for one thing or another and it never has worked out for me so far. Here's hoping. I would really love to lose a few pounds too if that would work! I'm hoping to try for baby #3 later this year and I haven't been able to get either of the first two babies' weights off. I am hypothyroid and my doctor keeps telling me my numbers look good on the current dose of Synthroid. I also feel pretty good so I don't have that motivation to eat differently. It's the low platelet issue (I want to birth at home and they won't let me if my platelets are too low) and the stubborn weight not coming off. Here's hoping it helps. If it doesn't lower my platelets it better gosh darn help me get some weight off. :P
ReplyDeleteI am supposed to be gluten free but everytime i start i quit because i just love junk food! But this article really inspired me to take control of my life! Thank you so much!
ReplyDeleteI am just a teenager and already i have to go gluten free. I have attempted it many times and failed miserably. I seriously have like no self control and everyday i wish gluten was illegal in the United States. But this post has really inspired me to push on and do this right and not give up. Thank you so much!
ReplyDeleteI have Hyperthyroidism and was just recently diagnosed with Celiac's Disease. It truly is tough to change the way you eat and cut out the one ingredient that's in everything you love. I am determined to make this work for my health. Thank you so much for writing this.
ReplyDeleteYou have one awesome doctor. I honestly wish all the information we know today, I knew 10 years ago. I got sick when I was 20. Three years later was diagnosed with hypothyroid. At that point I was already on meds. I didn't know I had an autoimmune disease until I turned 30. Now one crumb of bread makes me sick for days. I have more autoimmune diseases and I rely on thyroid meds. Gluten free is a fight everyday but the alternative's aren't even an option.
ReplyDeleteThanks for the wealth of information especially the cookbook. I have PCOS and thyroid issues and have recently decided to go gluten free as of tomorrow Aug 1.
ReplyDeleteI was just diagnosed with Celiacs Disease a week ago, I also have Hypothyroidism and all the symptoms listed for Celiacs. I've been really sick this last few years, nausea 24 hours a day 7 days a week,migraines, and the whole list of symptoms, horrible anxiety and depression, so bad in fact that I'm now house bound. 2 1/2 years ago I had brain surgery to remove a golf ball size tumor from my Pituitary. I have felt so sick everyday since, all my doctors kept telling me all my follow up tests are normal and that I'm still in the healing process. Well... I have finally found a Primary Care doctor that actually listens to me and sent me in for once again more blood work. This is where we found out about my now diagnosis of Celiacs (this explains a lot), along with allergies to nuts and soy. I thought I was going crazy! Someone even called me a hypochondriac. It's horrible knowing that something isn't right with your body but no one believes you or listens to you! I do agree you have to be your own health advocate and find the right doctor or team of doctors that I now have been blessed with. Now I get to have an interesting journey of finding the right foods and doing research on this Autoimmune Disease. I'm looking forward to feeling better and teaching others about this disease. One thing I did find out in my journey so far is that Celiacs is hereditary, so something to think about if you have a family member who may be expert he same symptoms as you. I have an Aunt who can get deathly I'll if she comes in contact with any kind of gluten even if it's airborne. I want to thank everyone who has posted their experience and advice because just only being a week into the diagnosis it is overwhelming! I do have to say I have noticed a difference so far, my stomach is setting down, I'm not experiencing as much discomfort or embarrassing gas as I have in the last few years, I'm looking f9to seeing the mul6othrr symptoms subside along the way. So I'm refusing to give in to all those gluteny yummy goodies, I'm facing this new lifestyle change head on, and looking forward to feeling human again for the first time in a long time!
ReplyDeleteI was just diagnosed with Celiacs Disease a week ago, I also have Hypothyroidism and all the symptoms listed for Celiacs. I've been really sick this last few years, nausea 24 hours a day 7 days a week,migraines, and the whole list of symptoms, horrible anxiety and depression, so bad in fact that I'm now house bound. 2 1/2 years ago I had brain surgery to remove a golf ball size tumor from my Pituitary. I have felt so sick everyday since, all my doctors kept telling me all my follow up tests are normal and that I'm still in the healing process. Well... I have finally found a Primary Care doctor that actually listens to me and sent me in for once again more blood work. This is where we found out about my now diagnosis of Celiacs (this explains a lot), along with allergies to nuts and soy. I thought I was going crazy! Someone even called me a hypochondriac. It's horrible knowing that something isn't right with your body but no one believes you or listens to you! I do agree you have to be your own health advocate and find the right doctor or team of doctors that I now have been blessed with. Now I get to have an interesting journey of finding the right foods and doing research on this Autoimmune Disease. I'm looking forward to feeling better and teaching others about this disease. One thing I did find out in my journey so far is that Celiacs is hereditary, so something to think about if you have a family member who may be expert he same symptoms as you. I have an Aunt who can get deathly I'll if she comes in contact with any kind of gluten even if it's airborne. I want to thank everyone who has posted their experience and advice because just only being a week into the diagnosis it is overwhelming! I do have to say I have noticed a difference so far, my stomach is setting down, I'm not experiencing as much discomfort or embarrassing gas as I have in the last few years, I'm looking f9to seeing the mul6othrr symptoms subside along the way. So I'm refusing to give in to all those gluteny yummy goodies, I'm facing this new lifestyle change head on, and looking forward to feeling human again for the first time in a long time!
ReplyDeleteI was just diagnosed with Celiacs Disease a week ago, I also have Hypothyroidism and all the symptoms listed for Celiacs. I've been really sick this last few years, nausea 24 hours a day 7 days a week,migraines, and the whole list of symptoms, horrible anxiety and depression, so bad in fact that I'm now house bound. 2 1/2 years ago I had brain surgery to remove a golf ball size tumor from my Pituitary. I have felt so sick everyday since, all my doctors kept telling me all my follow up tests are normal and that I'm still in the healing process. Well... I have finally found a Primary Care doctor that actually listens to me and sent me in for once again more blood work. This is where we found out about my now diagnosis of Celiacs (this explains a lot), along with allergies to nuts and soy. I thought I was going crazy! Someone even called me a hypochondriac. It's horrible knowing that something isn't right with your body but no one believes you or listens to you! I do agree you have to be your own health advocate and find the right doctor or team of doctors that I now have been blessed with. Now I get to have an interesting journey of finding the right foods and doing research on this Autoimmune Disease. I'm looking forward to feeling better and teaching others about this disease. One thing I did find out in my journey so far is that Celiacs is hereditary, so something to think about if you have a family member who may be expert he same symptoms as you. I have an Aunt who can get deathly I'll if she comes in contact with any kind of gluten even if it's airborne. I want to thank everyone who has posted their experience and advice because just only being a week into the diagnosis it is overwhelming! I do have to say I have noticed a difference so far, my stomach is setting down, I'm not experiencing as much discomfort or embarrassing gas as I have in the last few years, I'm looking f9to seeing the mul6othrr symptoms subside along the way. So I'm refusing to give in to all those gluteny yummy goodies, I'm facing this new lifestyle change head on, and looking forward to feeling human again for the first time in a long time!
ReplyDeleteCongratulations to any one who was able to get a diagnosis with in one visit much less one year. It took 30 years!!! for me to get a diagnosis. I actually had one Dr. tell me that Yes, my thyroid was a little low, (he would not give me a number, not that I would have known what to do with it) but Hypothyroid was not a recognized illness and taking this information to any other Dr. for treatment would get HIM laughed out of the medical profession......... Chew on that for 15 years. So I couldn't even get a synthroid Rx from him. I was put on depression pills, and Dexomethin and Fenophyn, I was even put on antipsychosis meds... to bring down anxiety that raised when I was on the anti depression pills. You don't know how many times I was told by different Dr.s "this isn't what this pill is traditionally used for but sometimes we see it helps some." And each Dr. I went to acted like I knew every thing that was in my records from the last Dr. I learned to go in to the office with the statement, "Talk to me like I've never heard any of this stuff before. Tell me everything." That's when I finally had an endocrinologist tell me that I had Hashmotos-thyrodidtis with adreanal somthing, something.... see I still dont' know exactly what it is, but I have an AID. So my next question to this Dr was, What can I do Diet wise to help? Her response was "Oh diet has nothing to do with it, you can't affect it with diet."
ReplyDeleteme: So there aren't any foods to eat more of or avoid?
Her: well you should stay away from Broccoli or Kale, hard greens like that, but that's up to you.
me:What about celiacs, gluten free? Should I look at removing gluten?
her:I tested for that, you don't have Celiac but some people seem to like it and maybe it would help, again that's up to you.
me: what about any supplements?
her: Well, your D levels are still a little low, so keep taking those, but there really isn't much you can do besides the synthroid. You just have to live with this.
I went to her office a few more times to get up to a synthroid level that seemed to help and then I have not been back. I have been finding posts like this and many others and reading, reading, reading... I have come to the conclusion that average endocrinologists are working under an industry literature that only wants to sell Pharma based ideologies. The hardest part is trying to figure this all out while dealing with the issues of the problem, (mental fog, tired all the time, hurting, anxiety, depression, pain from no where but everywhere, having a family to take care of and feeling like some one has my body remote and they are sitting on the channel changer). Kudos to any one who makes it thru. We are the ones who know, We are the ones who need to teach.
Hi, my T4 is 1.1 and my TSH is 0.46. Would you consider this in the normal range for a 34 year old female? Everything I read vs what my doctor says and how I feel contradict themselves.
ReplyDeleteHeather
Hi, my T4 is 1.1 and my TSH is 0.46. Would this be considered "normal" for a 34 year old female? Between how I feel, what my doctors say and what I read on the internet everything seems to be contradicting.
ReplyDeleteHeather
I was diagnosed with Celiac when I was about two so I have been gluten free my whole life. For people just starting out it can be overwhelming but it gets better. It just becomes second nature to read the ingredients on something before you eat it. Back when I was diagnosed, gluten free options were scarce but in todays society just about everyone knows what Celiac is or what it means to be gluten free. The food tasted like cardboard growing up but now it has become much better. You can walk into most grocery store and there is a whole isle just for gluten free foods. There are also a couple gluten free bakeries near where I live with monkey bread, cupcakes, cakes, and cookies. I don't mind being gluten free. Every time I go out to eat with friends, I'm not going to lie, it can be a hassle at some restaurants but we make it work. I google the restaurant before hand or call ahead of time. And if all else fails I just stick with a salad just to be on the safe side. There are so many gluten free options today. I can eat oreos, pizza, and pasta just like everyone else. Some of my friends even say my food doesn't really taste all that different. Anyway, my point is it gets better and I promise its not that bad.
ReplyDeleteI have celiac disease and hasimotos thyroiditis, I was diagnosed a year ago and it's still hard for me. I've gained weight and now it's harder for the weight to come off, thinking about the Paleo diet to see if it helps, any suggestions would be great.. thanks
ReplyDeleteI was diagnosed with celiac disease and hasimotos thyroiditis a year ago and still find it hard. I've gained weight since being gluten free and the weight is harder to come off now, thinking about trying the Paleo diet, any suggestions would be helpful. Thanks
ReplyDeleteI have had severe headaches for about 6-7 years. They are so severe, I have been to countless neurologists to try to diagnose them. The pain is in the back of my head on one side and my head literally swells in that spot. They come on out of no where and can last 10 minutes and are dibilitating. I had as many as 22 a day, even waking me out of a sound sleep. I cannot describe how scary this has been for me.
ReplyDeleteI also had other symptoms such as a persistent rash is areas I would shave, constipation, horrible bloating, weight gain and even abnormal bruising. I had a bruise from getting kicked in a soccer game, and ended up getting 2 sets of x-rays and an ultrasound because the doctors couldn't believe it wasn't broken by how purple my entire leg became. I also started getting other bruises very easily.
Googling all of these things, I thought I had leukemia. Terrifying! I went back to my primary care physician with a list of every possible symptom I could think of, and he too wanted to rule out leukemia while also testing for gluten/celiac. I also discovered many cousins with gluten sensitivity. Note: I asked to be tested for celiac. Tests all came back positive for gluten intolerance. I also had adnormal liver enzyme levels, and some other abnormal results.
Eliminating gluten has been a godsend. I will say how hard it is to do and you can make mistakes, especially when eating out. I can tell within minutes if I eat something that has gluten. The pain in my head comes back, although not as severe.
There are 4 types of celiac, and I have Atypical Celiac, along with some gastro issues. Celiac is associated with "Leaky Gut" but I have "Leaky Brain". Yes, this is a thing! It's a very serious condition and it's scary this went on for so long without a correct diagnosis.
When something doesn't feel right and you're not getting the right answers, be your own advocate. Anyone can be a hypochondriac when googling your own symptoms, but I almost had to. I feel like doctors try to treat one symptom and not put them all together. Make a list of every possible thing you feel is not normal or is off with your body, and fight for your own health.
Im so happy I found this blog it so freakin relatable to the struggle, I was diagnosed with Celiac disease a year ago and it has been a journey. I have learned a lot and I know that theres still more. When you start eating properly and find proper GF products life is better. I found this page through Pinterest, and like she said you really can find everything on Pinterest! Sometimes I just get lost looking, just like shopping at target. After reading this it really makes me want to continue working hard on understanding my body. PROGRESS IS PERFECTION.
ReplyDeleteThanks so much for the information! I, too, came across this post on Pinterest. I’ve read The Root Cause and done a lot of research if foing GF after being diagnostics with hypothyroidism l, but mine is not Hashimoto’s, as my antibodies are within normal range (only a 6). I DID, have great success when I went GF about a year ago. I had previously gained 50 pounds since all the symptoms started about 3 years ago, and during the One month I was GF (and also starting thyroid meds which I didn’t think helped too much though), I lost 26 pounds. Oh my goodness I felt great! Migraines gone! Plantar fasciitis improves, carpal tunnel pain gone...it was great. Then Hurricane Harvey hit and flooded our whole home and vehicles and everything went to crap, including our diet of eating gluten foods again. Now that we are finally settled back in, I am wanting to make the switch again. It IS hard at first but I know that I can do it. I am suffering with severe anxiety and depression now, along with every single symptom on your list you showed, as well as PCOS, no periods, more facial hair, SEVERE Carpal
ReplyDeleteTunnel pain, plantar fasciitis, Intersticial Cystitis, IBS, migraines, and like another reader mentioned, pretty much home bound bc it has all gotten so bad! It’s a viscious cycle bc it’s hard for me to even get out and see the doctors, bc the anxiety is so bad now, but if I don’t, I know I’m not gonna get better. For anyone reading, ditch the PCP that won’t listen and find a FUNCTIONAL medicine doctor. There are many that even accept insurance! I finally found one that is being proactive and looking at my case with ALL my symptoms being considered and trying to figure out WHY and not just giving me meds to mask the symptoms.
Good luck to anyone else on this journey and KNOW, you are not alone!
Thank you for this post, I was just diagnosed with hashimotos thyroiditis yesterday and the idea of going gluten free is so overwhelming but I'm determined to try for my health. I've also shared this to my husband because this post helped me understand a little better what we're dealing with
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