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Test Results?


sunny13

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sunny13 Newbie

I have been on medication (Robinul Forte) for Irritable Bowel Syndrome for the last 2 months. In the meantime I was tested for both a thyroid condition and Celiac's Disease. I don't have the test results in hand but I know that 2 out of the 3 things tested for concerning Celiac's reflect weak positive results. The 3rd was negative. Basically, my doctor said that he does not know whether I have Celiac's. He said that my options are to either continuing taking the medication for Irritable Bowel or try the Gluten-Free Diet. It seems that my symptoms have been somewhat better while on the medication, however, I do not want to take medication for the rest of my life. Any information would be greatly appreciated? Could the fact that 2 of these things tested for reflect gluten sensitivity rather than actual Celiac's disease? Do most of the people with the disease test positive for all 3 of the antibodies? I understand that the Gluten free diet is difficult to maintain, but if my stomach problems are something I can control naturally -- I am all for it!

Thank You -- this site is very helpful!


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Guest jhmom

My doctor tried to diagnose me with IBS too but I would not accept it. He never offered me meds (for IBS) and I lived with terrible pain on a daily basis. He finally did bloodwork to check me for Celiac but ruled it out when the bloodwork came back negative. I also had an endoscopy done which showed patchy inflammation and he continued to dismiss Celiac. I knew what I was going through was not normal and was not IBS, I knew something more serious was going on.

I really cannot offer any advise on the blood work except to say it is my understanding if you have a positive result you most likely have Celiac or gluten sensitivity. If you are not comfortable with the results you could check out www.enterolab.com they perform a stool panel test, which is more sensative than blood.

A gluten free diet is not bad, yes at first it can be a little overwhelming but it does get better especially after you see the change in yourself and the way you feel.

I hope this helps and that you get answers soon! :)

seeking-wholeness Explorer

sunny,

You certainly could have celiac disease. Blood tests can come back false-negative for a number of reasons. Also, celiac disease-related antibodies are concenrated INSIDE the small intestine and usually only "spill" over into the bloodstream LATE in the course of the disease! Another interesting observation is that blood antibody levels DO NOT correlate with the extent of intestinal damage. Some patients have low antibody levels but a lot of intestinal damage, while others have high antibody levels and little damage (but presumably the celiac disease is affecting other body systems, just not primarily the intestines).

If your doctor refuses to schedule a biopsy, you will need to decide whether to try the gluten-free diet immediately or pursue further testing first. Open Original Shared Link testing would probably still be accurate even after you go gluten-free (for a couple of months, at least), but conventional testing would NOT be!

The gluten-free diet is "difficult" only in that YOU must accept COMPLETE responsibility for ensuring that your food is safe to eat. It is extremely risky to trust other people's judgment, especially if they are not gluten-free themselves, and even their best intentions can easily be derailed by contaminated cookware or countertops! However, it is usually NOT difficult to stick with the diet once you start to see improvement, simply because you will feel so much better. It can take time before improvement becomes noticeable, and you WILL have a lot of accidents for the first year or so, but you will be healing--and that makes it worth it!

It is great that you prefer natural healing to drug "therapy"--too many people (in my opinion) don't! I hope you get some answers soon, so you can begin to heal. Good luck!

sunny13 Newbie

Thank you for your advice. I actually have the test results in my hand right now. The 2 tests showing weak positive results are the Antigliadin IgA and the Antigliadin IgG. It the tTG that reflects negative results.

After reading the responses that I have received from this message board and conducting my own research, I plan to stop taking the Irritable Bowel Medication this week and begin a gluten-free diet this weekend. I may also take advantage of the more specific test (enterolab). Like many other people on these message boards I tend to be prone to mouth sores as well. Also I notice that sometimes I develop a minor allergic reactions to certain types of beer. Could this be due to Gluten Sensitivuty/celiac disease?

Now I am on a quest to find out what food and drink are gluten-free. Any suggestions of where I can find detailed lists on the internet would be greatly appreciated! Again thanks for the quick responses :)

Guest jhmom

Good for you! I am happy to hear you are taking charge of your health!! :D

I do not drink beer or other drinks but it seems that I have read something about beer having gluten in it. If you do a search on "beer" on this board it will pull up all posts related to it.

As far as other gluten-free food and drink, here is a good link of "some" of the gluten free foods and drinks:

www.glutenfreeinfo.com

I hope this helps :)

gf4life Enthusiast

Hi Sunny13,

I have something to say about the blood tests. First off they are not 100% accurate, I don't think there are too many tests out there that are. <_< But as for the tTG test being negative, first off the test has to be performed by a specialized lab, and it has to be done using human tTG and most regular labs use pig tTG. Unless you use human tTG the test is not accurate. I personally tested negative on all the blood tests. My kids tested positive on the IGG only and have now had the tests repeated by their new doctor and he only uses Promethius Labs for testing for Celiac Disease and they only use human tTG and always check for IGA deficiency (which can alter your test results if you are deficient in IGA). I know my test were done by an incompetent lab (at least as far as celiac disease goes), but at least I can be assured that my kids tests are accurate. :rolleyes:

God bless,

Mariann

By the way, I was diagnosed through Enterolab using their Complete Stool and Gene Panel. I tested positive on the Gliadin and tTG stool tests, and positive for HLA DQ2 (the main gene responsible for celiac disease, the other being HLA DQ8).

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    • Dr. Gunn
      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
    • trents
      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
    • Scott Adams
      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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