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Tested Positive For Ttg Iga


Dolcenotte

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Dolcenotte Contributor

Hello. My name is Michelle. I've been battling with some unknown disease since I was about 13. I am now 27. I've had rheumatoid arthritis since I was 4. All my life I had severe bloating to the point I had to undo my pants to breathe and people always tried to give me their seat on the bus/train because i looked 8 mos. pregnant. This bloating was always accompanied with severe pelvic pain. I also use the bathroom about 6 times of day (which i didnt know was not normal till just recently), had probable diagnoses of fibroymyalgia, chronic fatigue syndrome, and maybe lupus but I was always a mystery to the doctors. I am always exhausted and always come down with the flu. I have extremely bad allergies and asthma can be bad at times. My father had all the same problems as me for as long as my mom knew him and no one could diagnose his stomach condition either. Unfortunately he passed from lung cancer in May 2006.

Recently, a friend told me to ask for a wheat gluten test because she knew someone who had the exact symptoms as me. Just got the results and tested positive for TTG IGA Ab. It say >100 and the ref range is <5. That sounds extremely scary to me. Can someone explain how bad this number is? ALso my MCH is 24.6 and the ref range is 27-31.

I also always have rheumatoid factor positive, high sedimentation rates, and presence of ANA antibody factor. Now I understand why my body is being attacked. This all makes so much sense and am grateful I finally know what has plagued my father and me for so many years. I am also extremely scared of changing my lifestyle so much and not being able to stick to it. I am going to the gastro doctor Monday and probably planning an endoscopy as soon as possible while I'm on the regular diet. I know this is all reversible with a 100% gluten free diet and have researched extensively for the past few weeks when I first heard about this disease. But I'm very concerned with this high value for ttg. Also any other suggestions/advice are greatly appreciated! Thanks for reading my long pathetic story.


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rinne Apprentice

Sorry, I can't be helpful about the numbers but I wanted to say hello and thank you for sharing your story. :)

A gluten free diet may seem overwhelming at first but it is very doable and feeling better is so worth it. You have found a great place for support.

As for the bloating wheat always did that to me but since being gluten free I don't have that problem.

happygirl Collaborator

Hi Michelle,

Welcome to the board!

Make sure that you keep eating gluten until you complete your endoscopy/biopsy. Ask your doctor to take 4-6 biopsy samples, since the damage in the intestines from Celiac is 'patchy.'

You may also want the other Celiac bloodwork run---discuss it with your doctor.

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA (which you already had)

Total IgA level.

Some good websites include:

www.celiacdiseasecenter.columbia.edu

www.celiaccentral.org

www.celiacdisease.net

www.celiac.org

and the parent site to this forum, www.celiac.com

I hope that you find answers to some of your health problems. When you start the gluten free diet, come back and we'll give you info on how to read labels, good product recommendations, recipes, etc. Its managable!

Best of luck!

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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