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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten-Free To What Extent?
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9 posts in this topic

Hello everyone, 

 

     My Celiac's Disease Panel came back normal, although, I know that they can be misleading so I am giving a gluten-free diet a try. Especially since it could be a sensitivity  I have horrible hormonal problems all over the chart. Low testosterone, low Thyroid function, low Estrogen, high IGF-1. I want to give this an honest shot.

 

To what extent do I need to avoid Gluten and for how long? I've even read that even gluten-free products contain microscopic amount of gluten. Should I worry about this? And how about cross contamination? 

 

What if I accidentally eat gluten. Is my progress shot?

 

Thanks,

Nate

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Try to do it the best you can.  You won't "shoot" your progress if you screw up, just slow it down.  We all make mistakes, sometimes inadvertent ones.  We also vary in sensitivity.  I am amazed at what other people can eat, but... it is a tradeoff, I have relatively few restrictions other than the gluten,oats,flax, soy flours, possibly millet (wasn't sure that was cross contamination or not),antibiotic residue/meat preservatives, while others may be able to eat more processed foods, like prepackaged goods, they have to otherwise avoid a lot more foods or categories because they have additional allergies or intolerances.   In the beginning, I was so seriously screwed up I went with a grain free diet at first, because I could do it, but it would be challenging for most people.  I knew within 24 hours I was on to something positive, which is also unusual, but I was stumbling around a bit because I didn't quite "get" all the cross contamination vectors. Most people would do fine on a regular gluten free diet, but, as always, lay off as much of the processed foods as possible and eat more fruits, vegetables, regular and sweet potato, plain rice, nuts, beans, avocados, olive oil, coconut, plain meats/fish/chicken.  As for any foods that come in a package, you just have to source them carefully to make sure that they aren't run on lines containing gluten. 

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Try to do it the best you can.  You won't "shoot" your progress if you screw up, just slow it down.  We all make mistakes, sometimes inadvertent ones.  We also vary in sensitivity.  I am amazed at what other people can eat, but... it is a tradeoff, I have relatively few restrictions other than the gluten,oats,flax, soy flours, possibly millet (wasn't sure that was cross contamination or not),antibiotic residue/meat preservatives, while others may be able to eat more processed foods, like prepackaged goods, they have to otherwise avoid a lot more foods or categories because they have additional allergies or intolerances.   In the beginning, I was so seriously screwed up I went with a grain free diet at first, because I could do it, but it would be challenging for most people.  I knew within 24 hours I was on to something positive, which is also unusual, but I was stumbling around a bit because I didn't quite "get" all the cross contamination vectors. Most people would do fine on a regular gluten free diet, but, as always, lay off as much of the processed foods as possible and eat more fruits, vegetables, regular and sweet potato, plain rice, nuts, beans, avocados, olive oil, coconut, plain meats/fish/chicken.  As for any foods that come in a package, you just have to source them carefully to make sure that they aren't run on lines containing gluten. 

I see. Thank you for the large response! I will keep everything you say in mind.

 

I do have a sort of...irrelevant question. When a someone has Thyroid issues with Celiac's Disease, ais it always autoimmune with thyroid antibodies? I have a bunch of hormonal issues and Thyroid issues is one of them. Hypothyroidism. But I have no antibodies present. 

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Thyroid problems are really common in celiacs (as compared to the regular population). I have hypothyroidism, and am up to 125mcg of synthroid, but my TPO antibodies were still within the normal range. Autoimmune attacks come and go - they don't stay steady. In my own situation, I think my TPO Ab was low because my immune system wasn't as active... or my thyroid is almost "toast". LOL ;)

 

Most thyroid issues are autoimmune. The rest are caused by cancer (antibodies usually go super high with this), pregnancy, extreme illnesses or drug induced... and I think those causes comprise only around 5-10% of all hypothyroid causes, the rest is hashimoto's.

 

As Takala said, try to get as close to 100% gluten-free as you can. Check your meds, spices, sauces, mixes, and contaminated baking supplies and tools. Try to avoid products made in contaminated facilities.

 

Also, many celiacs have issues with dairy. If you think it could affect you, you might want to drop dairy for a few months.

 

Good luck!

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As far as how careful you have to be and for how long goes, there doesn't seem to be a way to tell ahead of time.  You just have to try and find out.  I'd start with a normal gluten free diet.  Sometimes you will have an initial improvement and then experience symptoms again.  That can be from an increase in sensitivity and will get better if you start being more careful with the diet.  You need to watch your diet and symptoms carefully.  Keeping a food/symptom journal can help with that as well as help point out other possible problems like other food intolerances.  I hope that you feel better soon.

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Thyroid problems are really common in celiacs (as compared to the regular population). I have hypothyroidism, and am up to 125mcg of synthroid, but my TPO antibodies were still within the normal range. Autoimmune attacks come and go - they don't stay steady. In my own situation, I think my TPO Ab was low because my immune system wasn't as active... or my thyroid is almost "toast". LOL ;)

 

Most thyroid issues are autoimmune. The rest are caused by cancer (antibodies usually go super high with this), pregnancy, extreme illnesses or drug induced... and I think those causes comprise only around 5-10% of all hypothyroid causes, the rest is hashimoto's.

 

As Takala said, try to get as close to 100% gluten-free as you can. Check your meds, spices, sauces, mixes, and contaminated baking supplies and tools. Try to avoid products made in contaminated facilities.

 

Also, many celiacs have issues with dairy. If you think it could affect you, you might want to drop dairy for a few months.

 

Good luck!

Great post thank you! My thyroid problems have seemed... strange for someone my age. Not only that, but I possibly have Narcolepsy, which I know is linked to Celiac's Disease. So even though thyroid antibodies didn't show, it may still be autoimmunue? Good to know. I was planning on going gluten free first then dairy.

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Well do you guys think I might be on to something here with my problems?

 

I have occasional diarrhea in the mornings. Once every couple weeks. Bloating and Brain Fog

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Eating gluten in an individual who is gluten sensitive, whether it is celiac disease or non-celiac gluten senstivity (NCGS), can lead to a lot of inflammation and other health problems. With your symptoms, I would say that a gluten sensitivity (celiac disease or NCGS) is a very real possibility. 

 

You've been tested in the past and it was negative, but did you have all tests done? The full celiac panel is:

  • tTG Iga and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA
  • AGA IgA and AGA IgG

The first three tests indicate ongoing damage to the villi. Total serum IgA is a control test to ensure that you have adequate levels of IgA for accurate testing; 5% of celiacs don't. The last test is for gliadin sensitivity and is thought by some to work for both celiac disease and NCGS. If you are still eating gluten, you might want to retest yourself.

 

If you decide to go gluten-free, give it 3-6 months before you decide if there is any improvement. I'm guessing that your bloat will resolve very quickly, but non GI symptoms and bathroom habits, tend to take longer to improve. a food journal with daily symptoms is a good way to keep track of how symptoms can change on the gluten-free diet.

 

This is off topic but... I was recently found to have a high IGF-1 too, and usually the cause is a pituitary adenoma (benign) that results in acromegaly. Have you been checked for acromegaly? The tests are IGF-1 (high), oral glucose tolerance test  (OGTT) for growth hormone (GH) supression (will not be suppressed), and an MRI to look for a pituitary tumour. An adenoma can affect the sex hormones and thyroid function too.

 

You might want to have your IGF-1 rechecked or the other tests done. If IGF-1 stays high, it can cause some disfiguration, arthritis, problems with the heart (and other organs), and raises your risk of cancer.

 

IGF-1 has no link to celiac except that it is often low in those with malnutrition or low caloric intake, which can occur in celiacs.

 

Good luck!

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Did you have a biopsy done? Blood testing can sometimes be false-negatives, so if you're willing hold out and eat gluten a while longer, a biopsy would tell you whether or not there's damage to your villi. If there's not, then its more likely you have NCGI.

Of course, it's up to you. My bloodwork was also negative and I didn't do a biopsy (couldn't wait any longer), but given my family history I treat myself as a Celiac. If you do want a definitive answer, get it done now, because going back to eating gluten once you've been off it for a while can cause a lot of problems.

Either way, it sounds like eating gluten-free will help you.

 

Good luck and happy healing!

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