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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Celiac & Obesity
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36 posts in this topic

I have been overweight all of my life and have found nothing to combat my weight issues. My thyroid was fine, I didn't have diabetes, and was eating normally.

February 2005 I was diagnosed with celiac and have lost 25 pounds since going gluten-free. I had lost 37 pounds prior to that on Weight Watchers on the Core Program which elimates a lot of wheat-containing foods. My GI told me that my body responded this way as a result of the malnutrition caused by my celiac. He told me that most people are very thin and underweight, but that there are more and more cases each year of overweight celiacs. He said that my body packed on the pounds to protect itself from the "poisonous gluten". I still have a long way to go until I reach my "target weight", but at least I'm on the right track!

Does anyone else know anything about this or are there any other overweight celiacs out there? Any solutions on how to lose weight while gluten-free?

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My son was diagnosed fairly recently, and he is slightly (like 5 lbs or so) overweight. Definitely not underweight! I'm not sure about the reasoning behind WHY this is - but, heard it's not that uncommon.

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I was diagnosed as being hypothyroid. I never went on medication because sonn after i found out I was a celiac. After going gluten-free it completely corrected itself. I lost about 25 pounds without trying. I was never obese. Always a skinny child and thin teenager and young adult. It wasn't until I started to get really sick that the pounds came on. I couldn't understand how someone who didn't eat that much and who was vommiting almost daily and who had chronic diarreah could possibly be overweight!! <_< But my doctor explained it to me like yours did. He said that because of the terrible malnutrition, that my body went into starvation mode. hanging on to every ounce of fat it could.

I have also read many articles about how common this is becoming in celiacs. I believe that because of the way doctors were traditionally taught (that celiacs have to be skinny) I think that overwieght people have a harder time being diagnosed.

Wendy

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I used to be obese but not anymore. Once I went gluten-free the weight came off pretty easy. I cannot eat any starchy carbs, refined sugar and must really watch my portions. I also exercise a lot, walking, bicycling and weight lifting.

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I fit into this category as well. The gluten-free diet is healthier - that's a good start - I have always had better results in losing weight with exercise (as is the norm). I joined curves - but whatever works is better than not working it at all. I think consistancy is the key...as it is with anything.

Good luck!!

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Yep, I've dealt with trying to lose weight or keep it off. Exercise and portion control. Even "eating normally" can be eating more calories than YOUR body needs if you're not very aware. If I don't calorie count, I can find myself with some "calorie creep" in my diet, even if I'm still eating normally. Add to that the fact that a lot of us need fewer calories than the standard (for me to maintain, without exercise, I need around 1600 a day - 2000 would be a BAD idea for my waistline! ;-) But exercise is also important for me for keeping the weight off.

Slow and stead works, even if it's really really frustrating! ;-)

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I have been overweight all of my life and have found nothing to combat my weight issues.  My thyroid was fine, I didn't have diabetes, and was eating normally. 

February 2005 I was diagnosed with celiac and have lost 25 pounds since going gluten-free.  I had lost 37 pounds prior to that on Weight Watchers on the Core Program which elimates a lot of wheat-containing foods.  My GI told me that my body responded this way as a result of the malnutrition caused by my celiac.  He told me that most people are very thin and underweight, but that there are more and more cases each year of overweight celiacs.  He said that my body packed on the pounds to protect itself from the "poisonous gluten". I still have a long way to go until I reach my "target weight", but at least I'm on the right track!

Does anyone else know anything about this or are there any other overweight celiacs out there?  Any solutions on how to lose weight while gluten-free?

<{POST_SNAPBACK}>

Yep, I'm overweight too (40+lbs), and don't much like it. I don't know if the difficulty in getting it off is the celiac disease, over 45, or what. I have fought to lose weight, then I get SOOOO hungry that I devour everything and put it back on :( . I keep swearing that I'll do it this time, but I've been swearing that for 5 years now. I do know that I have to eat more grams of protein than a normal diet (I think that's 50 grams/day for an average 2000 cal. diet) and that I have to keep the calorie count down to about 1600. I think my metabolism is really really slow. I try to excersize, but when I do too much the fatigue sets in and I get sick. But I have at least toned up a lot this year, replacing some of the fat with muscle, so I guess I'll have to give myself credit for that.

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I was diagnosed as being hypothyroid.  I never went on medication because sonn after i found out I was a celiac.  After going gluten-free it completely corrected itself.  I lost about 25 pounds without trying.  I was never obese.  Always a skinny child and thin teenager and young adult.  It wasn't until I started to get really sick that the pounds came on.  I couldn't understand how someone who didn't eat that much and who was vommiting almost daily and who had chronic diarreah could possibly be overweight!!  <_<  But my doctor explained it to me like yours did.  He said that because of the terrible malnutrition, that my body went into starvation mode.  hanging on to every ounce of fat it could. 

I have also read many articles about how common this is becoming in celiacs.  I believe that because of the way doctors were traditionally taught (that celiacs have to be skinny) I think that overwieght people have a harder time being diagnosed. 

Wendy

<{POST_SNAPBACK}>

This is the reason it took so long for me to be diagnosed. Your story sounds almost exactly like what happened to me. In the last week since I have been gluten-free I have lost five pounds. I am hoping to get back to my regular weight again.

:unsure:

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I have steadily gained weight since my Feb., 2005 diagnosis of celiac. I have never been thin, but more on the shapely side of healthy. I've gained about 20 lbs. since my diagnosis, and am miserable about it. I'm 29 yrs old, and I don't know if I should attribute this to eating gluten-free or my metabolism slowing down. I initially thought that the only good thing that would come of my diagnosis was weight loss, boy what a surprise! When I had my labs and bone density tests, I wasn't found to be lacking any vitamin, mineral, or nutrient. All of my labs (besides antibodies) were within normal limits.

I'm doing a great job with the gluten-free diet, my antibodies and 2nd EGD biopsies are all normal, but I seem to be continuing to gain. My activity patterns haven't changed much. However, I clearly find it more difficult to be satisfied on the gluten-free diet eating normal portion sizes of the foods that I like. I also find myself craving protein like I never did before. As a result of all of the meat that I was eating, my cholesterol went up over 100 points, clearly to an unhealthy range.

How long did it take for other people's bodies to regulate with weight gain/loss?

I think that despite my normal body weight, maybe my body wasn't absorbing all of the calories that I was ingesting, and now that my intestines are healed, I'm actually metabolizing everything that I'm ingesting.

Obiously, increase my exercise, decrease my portions, watch what I'm eating.

Any other suggestions?

Thanks,

Kelly :)

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I have celiac and so does my mother (her diagnosis via biopsy spurred my desire to get tested). The two of us are a normal weight. However, most studies show that having only one blood relative (first order - parent or full sib), you have a 4-10% chance of developing celiac disease.....not very high to me. I have always wondered if my dad's side has it as well - they have terrible gas on that side of the family and everyone is very obese (40-100lbs overweight). I know that my dad (years ago and prior to their divorce) mentioned to my mom that he might have a sensitivity to barley since beer caused him discomfort. However, no one on that side wants to get tested.....likely b/c they fear the results. It is so frustrating ....... A

baby was recently born on that side of the family and I have never seen such a fussy baby in my life. She cried all the time and her parents called her "gassy". I wonder if my aunt's milk contained gluten or some other allergen or irritant that bothered the baby's system.

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Hello Just joined this site. Have been diagnosed 2 years. Gained weight after eating too many gluten-free products (snacks, etc). Felt deprived, so bought all gluten-free products in sight. Does anyone know if the Diet Protein Drinks are gluten-free? I need a jump start.

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Hi Kelly!

Your story sounds exactly like mine. I was diagnosed 3 years ago and have gained about 35 lbs. After going gluten free, nothing The gluten free diet wasn't working for me because I still felt like crap--bloated, gasy, D, unhappy.

So, I tried the Specific carbohydrate diet (SCD) and I feel amazing! No bloating, no gas, lots of energy and 9 lbs lighter in one week. I don't think that was fat loss, but perhaps weight from all the bloating and undigested food. I STRONGLY recommend it!!!! It's the only thing that has worked for me. It is really strict, but definitely worth it!

Check out the SCD thread.

Good luck!

Heather : )

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I was very skinny as a child, but as an adult I couldn't lose weight no matter what diet I tried, until I was dx with celiac and went gluten-free. I have since lost over 80 pounds and the only thing I am doing differently is eating gluten-free.

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"Hi Kelly!

Your story sounds exactly like mine. I was diagnosed 3 years ago and have gained about 35 lbs. After going gluten free, nothing The gluten free diet wasn't working for me because I still felt like crap--bloated, gasy, D, unhappy.

So, I tried the Specific carbohydrate diet (SCD) and I feel amazing! No bloating, no gas, lots of energy and 9 lbs lighter in one week. I don't think that was fat loss, but perhaps weight from all the bloating and undigested food. I STRONGLY recommend it!!!! It's the only thing that has worked for me. It is really strict, but definitely worth it!

Check out the SCD thread.

Good luck!

Heather : ) "

Heather,

Can you recommend sites or locations to research the specific carbohydrate diet? I'm intrigued about this, however I don't know if I could honestly tolerate more restrictions. Nothing resulted in a search for SCD on this message board.

--Kelly

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There is an SCD thread going on right now... There are quite a few of us on the SCD and having great results. I am a celiac gainer... if I eat gluten, I can pack on 10 lbs. over night. NOT comfortable or fun. The SCD has done wonders for me. :) I have lost 40 lbs. since March, and continue to lose. I will provide the link to our thread:

http://www.glutenfreeforum.com/index.php?showtopic=5437&hl=

Hope you find the answers you are looking for!! :)

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I was always a skinny kid, when I was 16 I lost a lot of weight on *top* of being skinny and people started to worry about me a little. This, in retrospect, also happened right around the time I started having D most of the time. I gained a little back and stayed pretty healthy until about 5 years ago, when I gained about 20 or more pounds and couldn't lose them. It didn't matter if I didn't eat at all, the weight just stayed on! I really ate very little and still gained. After going gluten-free the weight seems to be coming off by itself, at first quickly and now a little at a time. I can eat more than I used to but look better! Hopefully this will contine until I reach the weight I'd like to be at (maybe 10 more pounds). As it is I'm not technically *over* weight...but I'm well over the weight I feel comfortable at.

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:(:unsure: Kelly - I'm in the exact same boat as you! I was diagnosed with Celiacs in October 2004 and have been gluten free since December 2004 and I've gained 20 lbs! It's very depressing! Nothing I do seems to work. I'm exercising the same and really the only major thing I don't eat that has gluten in it is bread. I've found gluten-free bread that is fine. I've joined WW's and hope to have results that way, but who knows! All I can think is that my body wasn't absorbing nutrients and now it is. But when is the weight gain going to stop??? Let me know if you get any good ideas!

Thanks!

Kara

I have steadily gained weight since my Feb., 2005 diagnosis of celiac.  I have never been thin, but more on the shapely side of healthy.  I've gained about 20 lbs. since my diagnosis, and am miserable about it.  I'm 29 yrs old, and I don't know if I should attribute this to eating gluten-free or my metabolism slowing down.  I initially thought that the only good thing that would come of my diagnosis was weight loss, boy what a surprise!  When I had my labs and bone density tests, I wasn't found to be lacking any vitamin, mineral, or nutrient.  All of my labs (besides antibodies) were within normal limits.

I'm doing a great job with the gluten-free diet, my antibodies and 2nd EGD biopsies are all normal, but I seem to be continuing to gain.  My activity patterns haven't changed much.  However, I clearly find it more difficult to be satisfied on the gluten-free diet eating normal portion sizes of the foods that I like.  I also find myself craving protein like I never did before.  As a result of all of the meat that I was eating, my cholesterol went up over 100 points, clearly to an unhealthy range.

How long did it take for other people's bodies to regulate with weight gain/loss? 

I think that despite my normal body weight, maybe my body wasn't absorbing all of the calories that I was ingesting, and now that my intestines are healed, I'm actually metabolizing everything that I'm ingesting.

Obiously, increase my exercise, decrease my portions, watch what I'm eating.

Any other suggestions?

Thanks,

Kelly :)

<{POST_SNAPBACK}>

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:(  :unsure: Kelly - I'm in the exact same boat as you!  I was diagnosed with Celiacs in October 2004 and have been gluten free since December 2004 and I've gained 20 lbs!  It's very depressing!  Nothing I do seems to work.  I'm exercising the same and really the only major thing I don't eat that has gluten in it is bread.  I've found gluten-free bread that is fine.  I've joined WW's and hope to have results that way, but who knows!  All I can think is that my body wasn't absorbing nutrients and now it is.  But when is the weight gain going to stop???  Let me know if you get any good ideas!

Thanks!

Kara

<{POST_SNAPBACK}>

Kara, it's good to know that there are other people out there with celiac disease that are having the same weight problems that I'm having. Thanks for your correspondance.

I think that the psychological component of "being denied" food choices has a lot to do with my feelings of being unsatisfied with normal portions. I too have found substitute foods, and really don't have any complaints about the gluten-free diet overall. I've also considered WW. I joined back in July, but failed after one week and concluded that I didn't have the motivation. I felt frustrated during the meeting when the people were talking about foods that I couldn't eat. I guess I feel that I do better with "out of sight, out of mind". I don't care to hear about the foods that these people have found that are low in points that are not a gluten-free option. Good luck to you! Please keep me up to speed on your progress.

--Kelly

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Kara, it's good to know that there are other people out there with celiac disease that are having the same weight problems that I'm having.  Thanks for your correspondance. 

I think that the psychological component of "being denied" food choices has a lot to do with my feelings of being unsatisfied with normal portions.  I too have found substitute foods, and really don't have any complaints about the gluten-free diet overall.  I've also considered WW.  I joined back in July, but failed after one week and concluded that I didn't have the motivation.  I felt frustrated during the meeting when the people were talking about foods that I couldn't eat.  I guess I feel that I do better with "out of sight, out of mind".  I don't care to hear about the foods that these people have found that are low in points that are not a gluten-free option.  Good luck to you!  Please keep me up to speed on your progress.

--Kelly

<{POST_SNAPBACK}>

Me three. Only it's 30+ pounds I need to lose. I figured it was probably being denied enough foods already and now I have to deny myself even more :( But I try to look on the positive side of getting this weight off - my left knee will probably stop hurting, my left foot will be better (fallen arch), and a new wardrobe!

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My son and i were both the same way. I do have a thyroid problem which compounded things but we are both large celiacs which made getting someone to take me seriously extremely hard. I have also lost 35 pounds on weight watchers.

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My son and i were both the same way.  I do have a thyroid problem which compounded things but we are both large celiacs which made getting someone to take me seriously extremely hard.  I have also lost 35 pounds on weight watchers.

<{POST_SNAPBACK}>

Dear Kelly, Kara, Nettie and Laurie:

Thank goodness, I joined this forum!!! I've been thinking that perhaps I was the only one with this problem!!

I joined Weight Watchers, and I too was frustrated with all the foods everyone else was eating that I couldn't have. I just couldn't get into it.

I've started exercising, but so far it has not helped at all!!

If any of you have any success, please let me know! I am getting desparate!!!

Jackie

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I have been overweight all of my life and have found nothing to combat my weight issues.  My thyroid was fine, I didn't have diabetes, and was eating normally. 

February 2005 I was diagnosed with celiac and have lost 25 pounds since going gluten-free.  I had lost 37 pounds prior to that on Weight Watchers on the Core Program which elimates a lot of wheat-containing foods.  My GI told me that my body responded this way as a result of the malnutrition caused by my celiac.  He told me that most people are very thin and underweight, but that there are more and more cases each year of overweight celiacs.  He said that my body packed on the pounds to protect itself from the "poisonous gluten". I still have a long way to go until I reach my "target weight", but at least I'm on the right track!

Does anyone else know anything about this or are there any other overweight celiacs out there?  Any solutions on how to lose weight while gluten-free?

<{POST_SNAPBACK}>

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Dear Kelly, Kara, Nettie and Laurie:

Thank goodness, I joined this forum!!! I've been thinking that perhaps I was the only one with this problem!! 

I joined Weight Watchers, and I too was frustrated with all the foods everyone else was eating that I couldn't have.  I just couldn't get into it. 

I've started exercising, but so far it has not helped at all!!

If any of you have any success, please let me know!  I am getting desparate!!!

Jackie

<{POST_SNAPBACK}>

I've lost lots of pounds (two or three at a time). Unfortunately I've put every single one back on, plus some. Turns out I was poisoning myself at a very low level everyday!!! I was eating cold cereal with malt in it! How dumb of me!! and after nine years of dealing with celiac disease, you would think that I would know better. But I keep trying. Right now I'm focusing on limiting my calories to 1800/day and making sure my protein intake is 50+grams/day. And excersize. I've already lost 1/2 lb! :P Only 52.5 more to go!

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I've been both... death skinny to 50+ lbs overweight. Was sickly (asthma) from birth, and stick thin until about 10 yrs old. Started gaining, and by 12 was 15-20lbs overweight. It fluctuated over the yrs, but by 40, it had hit 50+ pounds. Started learning about health, and ate better, but never could keep off the weight lost for any lenght of time. Like many people born before the 1980's, I just accepted there was little to be done, so I focused on more important things. Then about the mid 1990's, we bought Dr. D'Adamo's blood type diet book. This made a huge difference, then we bought Dr. Weil's book, and that also helped. Although we lost some weight, we couldn't get where we wished, and mainly because we only partially followed the "no wheat" guideline in the 'Type O' diet.

Early summer brought unexpected poor health, and Celiac came to mind--an old Cherokee man told me about it/having it, and said I may also, being part native myself. I started gluten-free August 1st, and have lost 30-35 lbs of fat, and have likely gained a fair amount of lost bone and muscle mass. I knew Celiac wasted your ability to assimilate nutrients, so I didn't diet or limit my variety of foods so my body could fuel it's recovery. After the first 4-5 days through the next 9-10 weeks, I ate 30-35% more than normal... chicken/eggs, greens, beans, peas, potatoes, fruit, etc, etc. I figured I'd gain, but I lost because the body was no longer in 'starvation mode', AND I didn't deprive the nutritional needs of rejuvenation. My appetite is back to 'normal', but I'm still "nutrition packing" so I can loose the last 15-20lbs. I'm eating all 'real food'; no rice cakes, tofu, fake fats, "healthy margarines", fake/altered sugars, no fish oils, flaxseed oil, no excess fiber, no Weight Watchers, no South Beach, etc, etc, etc. Just real, whole, [mostly] unprocessed food. Meat/eggs, fresh veggies, fresh fruit, real butter, low-fat mayo, low-fat buttermilk [for salad dressing and 100% corn cakes], etc.

When I loose 15-20 [more] lbs, I'm going to cut back on [certain] fats and carbs, to hopefully avoid that problem. Looking forward to Dr Weil's new book... and I think Dr D'Adamo came out with one lately.

GC

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I've been both... death skinny to 50+ lbs overweight. Was sickly (asthma) from birth, and stick thin until about 10 yrs old. Started gaining, and by 12 was 15-20lbs overweight. It fluctuated over the yrs, but by 40, it had hit 50+ pounds. Started learning about health, and ate better, but never could keep off the weight lost for any lenght of time. Like many people born before the 1980's, I just accepted there was little to be done, so I focused on more important things. Then about the mid 1990's, we bought Dr. D'Adamo's blood type diet book. This made a huge difference, then we bought Dr. Weil's book, and that also helped. Although we lost some weight, we couldn't get where we wished, and mainly because we only partially followed the "no wheat" guideline in the 'Type O' diet.

Early summer brought unexpected poor health, and Celiac came to mind--an old Cherokee man told me about it/having it, and said I may also, being part native. I started August 1st, and have lost 30-35 lbs of fat, and have likely gained a fair amount of lost bone and muscle mass. I knew Celiac wasted your ability to assimilate nutrients, so I didn't diet or limit my variety of foods so my body could fuel it's recovery. After the first 4-5 days through the next 9-10 weeks, I ate 30-35% more than normal... chicken/eggs, greens, beans, peas, potatoes, fruit, etc, etc. I figured I'd gain, but I lost because the body was no longer in 'starvation mode', AND I didn't deprive the nutritional needs of rejuvenation. My appetite is back to 'normal', but I'm still "nutrition packing" so I can loose the last 15-20lbs. I'm eating all 'real food'; no rice cakes, tofu, fake fats, "healthy margarines", fake/altered sugars, no fish oils, flaxseed oil, no excess fiber, no Weight Watchers, no South Beach, etc, etc, etc. Just real, whole, [mostly] unprocessed food. Meat/eggs, fresh veggies, fresh fruit, real butter, low-fat mayo, low-fat buttermilk [for salad dressing and 100% corn cakes], etc.

When I loose 15-20 [more] lbs, I'm going to cut back on [certain] fats and carbs, to hopefully avoid that problem. Looking forward to Dr Weil's new book... and I think Dr D'Adamo came out with one lately.

GC

<{POST_SNAPBACK}>

Hi GC1

Glad to hear that you are doing better.

I have a few questions about your last post.

1) Why did you eat corn cakes, but not rice cakes?

2) Why did you omit healthy oils (fish oil/flaxseed), but still eat low fat mayo and butter?

Thanks,

Heather

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    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
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