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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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    • trents
      We are all different and our immune systems are unique. I will say, however, that I have not gotten the impression as a moderator and reading hundreds and hundreds of posts on this forum over the years that a dermatitis herpetiformis outbreak caused by grains other than wheat, barley and rye is common. But perhaps it is more common than we have realized and it could be why it it is seems to be common that those who suffer from dermatitis herpetiformis struggle to keep it under control. Perhaps there are qualities found in all cereal grains besides gluten that are contributing factors. Also, have you tried a low iodine diet to see if it helps with your dermatitis herpetiformis? Reportedly, reducing iodine helps some folks afflicted with dermatitis herpetiformis.
    • Richardo
      Ok thanks Trents. I had the lesions biopsied and confirmed dermatitis herpetiformis, so I guess dermatitis herpetiformis can be associated with other grains not typically gluten. I appreciate your comment and I'll give Dr Osborne the benefit of the doubt because without him I would never have known of my grain intolerance and would still be suffering today. I simply never read anyone explain how grains could worsen dermatitis herpetiformis and I feel that information should be made much more readily available. Hey if someone tries going grain free and there's no improvement, no loss, however it drastically changed my life for the better and could at least be offered as a suggestion to sufferers from dermatitis herpetiformis. The other option is Dapsome and I wouldn't want anyone taking that chemical if there was a more natural solution. thanks again 
    • trents
      Welcome to the forum, @Richardo! We sometimes run across terms like "rice gluten", "corn gluten", and "oat gluten" but they are used informally and, technically, it is incorrect to speak of grains other than wheat, barley and rye as having gluten. Gluten is a protein with a specific structure found only in wheat, barley and rye. Other cereal grains contain proteins that are more or less similar in structure to gluten in some ways but are not actually gluten. Having said that, the proteins found in these other cereal grains are similar enough to gluten to possibly cause cross reactivity in some celiacs. Cross reactivity also happens with non cereal grain foods as well that have a protein structure similar to gluten. A prime example is dairy (the protein "casein"). Another example may be soy. Other foods can also cause cross reactivity for different reasons, such as microbial transglutaminase (aka, "meat glue") used commonly in pressed meat products. Just so you'll know, Dr. Osborne's claims have not received wide acceptance in the celiac community and are looked upon with skepticism by the medical and scientific community. Although he is a board certified nutritionist, his doctorates are actually in chiropractic medicine and pastoral science: https://www.drpeterosborne.com/about/dr-peter-osborne/ I am not sure Osborne has the training and background to address the chemical structure that defines gluten. I would encourage you to do some research on what gluten actually is. I have done this for myself and came away convinced that only wheat, barely and rye actually contain the protein gluten. I do not doubt your claims that you have breakouts of dermatitis herpetiformis from consuming these other grains. I am just contending it is not actually from gluten.
    • Richardo
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