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Help with test results


KL07

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KL07 Newbie

Hey

So I'm new to figuring out if I have Celiac or not. Im 27 year old female and for a good 10 years now my general gut health and health in general has been poor, i constantly feel tired; bloated; stomach problems and so on. Ive been admitted to hospital twice over server gastroenteritis where i've end up on drip all day with insane dehydration, each time having to reintroduce food into my diet and with that becoming intolerant to some things. Looking on the Celiac website I defo have a lot of the symptoms and done there question test and it said i should be tested, even spoke to my friend who has it and we have a lot of similarities 

Recently i've had blood tests done and on my first set it said I didn't have Celiac with my TTIgA coming back as <0.7u/ml and I had very low iron so i went on iron supplement tablets for 4 weeks, plus the doctor said my B12 is in the low range of normal. I told the Doctors that I hadn't been eating Gluten as much as i should have (done my research after the test they never told me this before) so he said have another one in 5 weeks (which i don't think was enough time) and it's come back saying that i'm negative again but my TTIgA is still coming back as <0.7u/ml does this mean I have a Low IgA deficiency? Trying to research this is very confusing! Also my Iron has now gone back up but its now in the low range of normal whatever that means same as my B12. The doctors aren't going to do anymore and said i should just try not eating gluten for a while, but i feel like i definitely have Celiac if not maybe non Celiac Gluten intolerance. but my doctors wont help me anymore.

I have been feeling the same if not worse since eating more Gluten over the last 5 weeks and I just don't know what the next step is. If anyone has any advice or can answer any of my questions i be very greatful!

Thanks


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trents Grand Master

Welcom KL07 to the forum!

Yes, you have many symptoms of celiac disease. Before the blood antibody test you should be eating the equivalent of a slice of wheat bread daily for 6-8 weeks. Sounds like you have not had a "full" celiac blood panel done yet, just partial. The most targeted antibody test for celiac disease is the TTG test but it is the least sensitive. That's why you should have a full panel done. The other IGA tests are less specific but more sensitive. Yes, the problem could be low IGA levels which will skew the test results. https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

 

If you are not getting cooperation from your doctors then you can order a home celiac disease test kit for about $100 USD. https://www.imaware.health/at-home-blood-test/celiac-disease-screening

Scott Adams Grand Master

Welcome to the forum! Is there a chance that you could post the full blood test results here, along with the high marker/cut off for celiac disease? This info could be very helpful to better understand your results.

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      Welcome to the forum, @WildFlower1, Here's an article that explains about the updated gluten challenge guidelines.  Be sure to read the comments below the article. Have you been checked for nutritional deficiencies?  Low iron can affect antibody production, causing false negatives on antibody testing.  Do you currently struggle with low iron?   Low Vitamin D can cause amenorrhea, cessation of menstrual periods.   Correcting nutritional deficiencies is a big part of Celiac disease.  We don't absorb well the eight essential B vitamins and other vitamins and minerals like calcium, resulting in osteopenia, hair loss, infertility, and neurological symptoms.  Unfortunately, doctors are not given much training in nutritional deficiencies and don't recognize the connection with the malabsorption of Celiac disease. We get very frustrated here with doctors ordering us to put a harmful substance in our bodies in order for them to say "that makes you sick".   Duh, we know that already. Do try to increase your consumption of gluten for at least two weeks before retesting.  Eat the chewy kinds of breads.  Cookies and cakes don't have as much gluten in them as those chewy artisan breads and thick pizza crusts. I admire your tenacity at continuing the gluten challenge.  Do keep us posted on your progress.  We'll continue to support you on your journey to diagnosis and recovery.
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      I would continue with your gluten challenge for another 2-3 weeks with the increased intake of gluten as outlined above.  You now say if you were confirmed to have celiac disease you would be even more strict about avoiding cross-contamination whereas in your first post you said, "Previously for many years 10+ I have been on a strict gluten free diet." Those statements seem to contradict one another. The celiac community as a whole understands that to be "on a strict gluten free diet" necessarily involves significant attention to cross-contamination. If you have not been strict with regard to CC up to now, it is difficult to say how that may have compromised your recovery and contributed to ongoing symptoms. Yet, even a significant reduction that falls short of gluten free can yield negative test results.
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