So Discouraged, Advice Needed On Testing.

dkhb2000 · February 4, 2011

For 13 yrs I have been nauseous, in the bathroom 7-10 times a day, felt like I was starting to death and slowly lost weight to put me below 100 lbs. I was blood tested for Celiac in 2005, negative. In November I started reading more on Celiac and how the blood tests in people were negative when they actually had it. So on November 20th, 2010 I removed all gluten from my diet and the change in my entire body is beyond incredible. I can tell I am still healing at day 79 but 100x better then I felt on the first day (with the exception of day 60 when I knew I ate cross contaminated food and was sick for 12 days). I decided to get tested with Dr. Fine at Enterolab, my results for the Anti-gliadin IgA and Casein were positive and my genetic testing showed DQ2 Celiac gene and DQ1 gluten sensitivity gene. I was not at all shocked that they were positive but I was shocked that I carry a gene for both.

I faxed the results to my doctor only to receive a phone call basically telling me I am full of crap that there is no way this test is right and there is no way it was gluten making me sick. When I asked him what he thought brought about the dramatic change in my health he replied

mushroom · February 4, 2011

I am so sorry you experienced this kind of reaction from a doctor who you trusted and liked. Your previous testing may have been false negative or you may have been a latent celiac at that time, not quite damaged enough to test positive. Or you may be a non-celiac gluten intolerant. I seem to recall reading just recently that the stool antibodies can occur in the absence of intestinal and bloodstream antibodies, but can't remember where I saw it

Unfortunately, there is a very large percentage of doctors who do not believe in non-celiac gluten intolerance. There are also a lot of doctors whose egos do not allow them to accept a patient's self-diagnosis. It's quite sad, really. I have to tell you, do not listen to him on this! You have solved your problem and do not be swayed from your course. It is your life, and you do not need a doctor's prescription to eliminate gluten from your diet.

You might like to show him one or both of these two references/articles:

https://www.celiac.com/articles/1101/1/Gluten-Sensitivity-A-Gastroenterologists-Personal-Journey-Down-the-Gluten-Rabbit-Hole-by-Dr-Scot-Lewey/Page1.html

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I am so glad you are feeling better and have solved your mystery. Do not let this man rain on your parade!

Takala · February 5, 2011

I just tell them I haven't eaten gluten for { "x" } number of years, and hell is going to freeze over before I would do so again.

Since I am so much more different off the gluten than on it, it comes in for a handy excuse as to why I was having so many problems with sero negative arthritis. I was also told more times than I could count, that I couldn't possibly have spinal arthritis at my age and gender, because of other negative blood tests, and they they honestly don't give a flying rat's *** unless it's flagrant rheumatoid in this country and they can shove you onto ultra expensive biologics, that my chronic kidney problems were idiopathic, that it was just probably my gall bladder flaring up, or heartburn, that my peripheral neuropathy was "fibro," or All In My Head, that my lack of balance should be MS but the spinal fluid test was negative, etc.

Oh, and I had a neurologist string me along for a year of appointments, looking for anything else, and had her send me a nastygram that she was not going to have me as a patient anymore after SHE cancelled my appointments, for my not showing up, after she lied to me about some test results, to my face, telling me I was basically a head case, that there was not a thing wrong with me, not knowing that I had made her crappy office give them to me earlier.

Let's see. From scans, it shows I have spinal stenosis in my cervical spine, and "bright spots" brain lesions from gluten damage, I am not able to track my eyes together, I can't feel certain parts of my arms and feet, and this woman sits there and pretends to thumb thru her files and says there is not a thing wrong with me and that diet has NOTHING to do with anything, health wise, even when I tell her that going grain free has dramatically reduced my arthritis flares. Any fool reading that family history I had put down, then the symptoms I had, and the diseases my relatives had, including a parent that died in middle age, would have picked it up, but they are all wedded to the blood test. And I wasn't thin. I am merely about as lily white complected as you can get, and descended from all the people who are the most likely to be celiac on this planet.

Okay, Buh- BYE !

I picked this info up by plugging all my symptoms into search engines and looking at medical information online, until I had what appeared to match, and then I tested out the hypothesis by guinea pigging myself in the kitchen pantry and talking to other people online with matching symptoms. Fortunately I had the science in school way back when, before the newest fad today going, of declaring anecdote is not proof of anything. Hey, if you don't have the solution, you may not know what the problem really is.

I just continued to refine my diet, eventually going from grain free initially to slowly reintroducing some small amounts of things like beans, rice, etc.

Oh, and after all good faith efforts to encourage people to get tested, if they only respond to diet, I harangue them to stick with it if it makes them feel better.

Because it sure beats the alternative of buying a single level house because you can't walk up and down the steps safely.

dkhb2000 · February 7, 2011

Thank you for the responses and the articles. I am still having some "bad" days which I think makes me question it a little bit, but I can't ignore the dramatic change on my "good" days. I figure I need to be patient, it takes a lot longer then 79 days to heal a body that has been sick for 13 years:)

imvein · February 8, 2011

Hi! I'm sorry you are so discouraged! I have been there! I am still in the process of figuring everything out -- am happy to say that I finally am feeling better after 7 years of nausea, vomiting, abdominal pain, weight loss...on and on... Constitutional symptoms. My previous GI doctor said flat out "you don't have celiac diseae, you don't have diarrhea". End of story. And I loved him as a doctor and a person, just "clicked" with him... Well, he moved to another state and I am seeing someone else. He is nice and now that I've been seeing him awhile, I like him, but not the same as the last guy. But, guess what? After mentioning my lingering thoughts that I have gluten problems... I started a gluten free diet on my own. AND I FEEL BETTER! He even said, "well, that's not how celiac disease usually presents, but whatever works, works!" I am so glad I persisted...I just felt this guy I really liked must know best, but you know, we all know our own bodies!! I would love to have the medical tests to prove that this is really "it", but the bottom line now is that I FEEL BETTER! I am now convinced my inner self knew what was right for me.

Keep yourself strong! YOU know your body best!! I know the disappointment you feel when someone you really liked and trusted doesn't necessarily agree, but in the end IT IS YOUR BODY. If I had had the strength to believe in myself, I may have felt better 7 years ago!

Good luck and my thoughts are with you!

Jill