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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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Mgh1213

Test results and advice?

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Hello everyone sorry if this is repetitive but I am a 26 year old female with hyperthyroidism, hypoestrogenism, severely underweight 88lbs  (lost 35 lbs)  just recently last week, found out that I have celiac disease. Panel is as follows: 

IgA - 144

Gliadin AB IGG - >160

Gliadin AbB IGA - >320

TTG IGA - >160 

Could someone tell me if the higher the number, does that necessarily mean it's any worse than the next person with the disease?? I'm really scared about all of this honestly, I'm afraid I don't have the self control to begin to stick to a gluten free diet as all I have eaten my whole life is junk..any advice is helpful. The mental is taking a toll on me. Also, I have not had a menstrual cycle in 5 years (was on Depo birth control shot for 3 yrs, been off for 2 yrs) would this celiac disease have anything to do with the lack of menstration? I have been on Hormone Replacement Therapy over a year now with no results. I have to get back to my old self by before I lose it forever...Thanks for the help. 

 

 

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51 minutes ago, Mgh1213 said:

Hello everyone sorry if this is repetitive but I am a 26 year old female with hyperthyroidism, hypoestrogenism, severely underweight 88lbs  (lost 35 lbs)  just recently last week, found out that I have celiac disease. Panel is as follows: 

IgA - 144

Gliadin AB IGG - >160

Gliadin AbB IGA - >320

TTG IGA - >160 

Could someone tell me if the higher the number, does that necessarily mean it's any worse than the next person with the disease?? I'm really scared about all of this honestly, I'm afraid I don't have the self control to begin to stick to a gluten free diet as all I have eaten my whole life is junk..any advice is helpful. The mental is taking a toll on me. Also, I have not had a menstrual cycle in 5 years (was on Depo birth control shot for 3 yrs, been off for 2 yrs) would this celiac disease have anything to do with the lack of menstration? I have been on Hormone Replacement Therapy over a year now with no results. I have to get back to my old self by before I lose it forever...Thanks for the help. 

 

 

Welcome! 

Chances are your high results are due to celiac disease.  Have you had a gastroenterologist consult?  He/she can refer you to a dietician who can help you with the gluten free diet.  

Celiac disease can wreak havoc on so many different areas of the body.  It just does not affect the GI tract.  There is a good chance that the gluten-free diet will help resolve your hormone issues.  Are you taking medication for your hyper thyroid?  Have you been diagnosed with Graves Disease?   

Higher test result numbers do not necessarily correlate with higher intestinal damage.  Common sense though, seems to indicate that your severe weight loss might mean severe intestinal damage.  Only a GI can confirm that. 

In the meantime, read through our Newbie 101 thread located at the top of the "Coping" section of the forum.  

If you have not met with a GI yet, keep in mind that additional testing for celiac disease requires you to be on a gluten diet.  

Edited by cyclinglady

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Thank you for your response, it really helps to hear from others and I will check out the coping forum that you mentioned. I do have Graves Disease and have been on anti-thyroid medication for 2 years, I just recently started seeing an Endocrinologist (had been seeing normal MD prior) and they said my thyroid levels were good and suggested some gastro tests since I was still having other symptoms. This included the celiac panel that came back positive. They have not referred me to a Gastroenterologist but I assume that is next. I think I will wait to cut out the gluten totally, until further testing is done by the correct specialist. I'm hoping getting this celiac in line, will help the rest of my problems such as the hormones, as you said. Thank you again for taking the time to reach out. 

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I have Hashimoto's Thyroiditis, but my Mom has Graves.  I have been both hyper and hypo.  Had crazy swings for a while while going through menopause and being undiagnosed with celiac disease.  My thyroid calmed down on the gluten-free diet.  My enlargement and nodules went as well.  Not sure if it was the gluten-free diet or simply reducing my immune response (inflammation)  by addressing celiac disease.  Does that make sense?  

In the meantime, you might consider eliminating most dairy.  Celiacs tend to be lactose intolerant --- at least temporarily unless you are genetically predisposed (as are some huge chunk of the world's population).  It could bring you some relief while you complete testing.  You might however, be one of the lucky celiacs who can eat all the dairy they want!  Throw in some veggies  and some healthy fats to help off set your weigh loss.  Your body is probably starving for nutrients right now, so make every bite count.  

 

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Hello and welcome :)

3 hours ago, Mgh1213 said:

I'm really scared about all of this honestly, I'm afraid I don't have the self control to begin to stick to a gluten free diet as all I have eaten my whole life is junk..any advice is helpful. The mental is taking a toll on me.

It can be scary and there's definitely a mental side to dealing with this which is at least as important as the physical. If available to you consider seeking out some counselling to help you process this. It was really useful for me, as were the people on this forum which is a great resource which you should use as much as you need to. 

And, easy to say, try to be optimistic! 

1 hour ago, Mgh1213 said:

I'm hoping getting this celiac in line, will help the rest of my problems

It may be that you've solved a huge health puzzle whilst you're still young and have lots of great years ahead of you, years which will be so much more enjoyable gluten free. Time will help you learn the diet and what at first seems impossible will become the new normal to the point where you won't have to think too much about it. We are an adaptable species and however hard it seems at the outset you will adapt and you will feel better.

Best of luck!

 

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14 hours ago, Mgh1213 said:

Thank you for your response, it really helps to hear from others and I will check out the coping forum that you mentioned. I do have Graves Disease and have been on anti-thyroid medication for 2 years, I just recently started seeing an Endocrinologist (had been seeing normal MD prior) and they said my thyroid levels were good and suggested some gastro tests since I was still having other symptoms. This included the celiac panel that came back positive. They have not referred me to a Gastroenterologist but I assume that is next. I think I will wait to cut out the gluten totally, until further testing is done by the correct specialist. I'm hoping getting this celiac in line, will help the rest of my problems such as the hormones, as you said. Thank you again for taking the time to reach out. 

I can guarantee you that once you get your weight back up to normal, your period will come back.  You sound really malnourished and if your weight gets too low, your periods will stop.  Don't panic.......I was down to about 92-94 pounds at diagnosis so you will be able to heal if you do the diet correctly and don't cheat. Once you start to feel better and your other problems are under control , you will find it easy to stick to the diet. Nothing beats health!  Good luck to you!

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Thank you all so much for the encouraging words and advice, it has been the most help so far! @cyclinglady I have heard of others that have had thryoid issues improved with the gluten-free diet so that definitely makes sense! I think a lot of things will get better once the gluten is gone. And wow! That is a lot to deal with mentally emotionally, etc. going through menopause, and dealing with celiac and thyroid problems. Major props to you for maintaining a positive attittude..that is most admirable and reminds me I can do this!

@Jmg I have considered talking to a counselor, like you said, it would help to talk to someone and I have very grateful to have figured this out while I am still young, I'm ready to take control!

@Gemini Thank you for your encouragement as well, it helps to hear someone has gone through a similar process..doctors have made me feel like I am the only person in the world trying to gain weight so I am excited for the future! Thank you all again. 

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