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Member Since 11 Aug 2013
Offline Last Active Feb 15 2014 05:07 PM

Topics I've Started

Very Confused - What Do I Do Now?

14 August 2013 - 04:35 PM

I am new on the board and this is my first post. My regular doctor (my PCP) and another doctor at a holistic clinic, have both just told me to go 100% gluten free, but I have not been officially diagnosed with Celiac. I have not had an intestinal biopsy and my dilemma is: Should I go gluten free now like they say, or should I pursue a diagnosis?


Four months ago I went on a low carb diet and eliminated most bread and sugar. I was not trying to go gluten free because I was not thinking about gluten sensitivity, but two days after I started that diet I had a big improvement in my mood. I'd had a lot of depression and anxiety but that all vanished. I thought that it was eliminating the sugar that had done that. Maybe it was partly that. But then I read about gluten sensitivity and about EnteroLab. Because I could order those tests on my own, I did it on a lark, not really expecting anything, but here are the results:


Fecal anti-gliadin IgA      138

Fecal anti-casein IgA        51

Fecal anti-ovalbumin IgA  30

Fecal anti-soy IgA            42


(The normal for all of these is under 10.)


In addition, I have two copies of HLA-DQ2.


I was surprised at these results and so started researching celiac disease. I'll give you a little of my medical history. I am 57 years old and female. For most of my life I've had chronic issues which have been diagnosed as fibromyalgia, TMJ,  migraines, joint pain, eczema, gallstones, and GERD. I also have vague neurological symptoms. Not vague meaning mild, because they have been very painful and disabling, but vague in the sense that the neurologists never nailed down a cause.


With this new EnteroLab information, I saw my primary doctor, who said I might be on to something and drew blood for a celiac panel:


Immunoglobulin A, Qn, Serum  131 mg/dL          (limits 91-414)

Deamidated Gliadin Abs, IgA        3 units             (0-19 is negative)

Deamidated Gliadin Abs, IgG        1 unit               (0-19 is negative)

t-Transglutaminase (tTG) IgA     <2    U/mL          (0-3 is negative)

t-Transglutaminase (tTG) IgG     <2    U/mL          (0-5 is negative)


So apparently I don't have celiac disease according to these, but for the past four months I must have been eating 95% less gluten than before. Could that have allowed me to heal enough to turn these factors negative? The other thing is that I understand the deamidated gliadin test is much more specific than the old gliadin test, which means more chance of false negatives.


The nurse called me with these results and told me that the doctor would like me to go gluten free anyway.


I also went to a holistic doctor because I wanted guidance for my new "low carb" diet and help sorting out which vitamin supplements I should take. But I took the EnteroLab report to him also and based on that, he diagnosed me with "Gluten Enteropathy" and he too told me to go 100% gluten free. He did not do a serum celiac panel, however.


Right now I feel completely up in the air with my diet. The milk, egg and soy sensitivity was news to me, and wrecks my new diet plan because it involved a lot of cheese and eggs. I figure I'll try to find a reliable source of duck eggs, and I'm trying coconut butter and whatnot to try to replace cheese, but I've always consumed a lot of dairy. I have a body-wide rash the doctors tell me is atopic dermatitis. I'm suspecting it has something to do with milk and/or wheat/egg who-knows-what-else food sensitivity?


But the big decision is whether to see a gastroenterologist for an intestinal biopsy. I know that the procedure has risks, so I don't want to do it unless it will give an accurate result. That means I should go back to eating a lot of gluten if I decide to push for that but it also means I want to pick the right gastroenterologist.


The reason I care about getting an accurate diagnosis is for my family.  One of my children, now an adult, has been diagnosed with IBS. She had a duodenal ulcer when she was ten years old. The other child had "failure to thrive" growth problems when she was little, but they never tested her for celiac. Now as an adult - a rather short adult - she is showing signs of the same chronic inflammatory problems that I have. They both are on inhalers for asthma, have TMJ, and many other things I never connected to gluten until now.  They are both planning to have families. If they have undiagnosed celiac disease, it seems to me imperative that they know this for the sake of their babies.


My siblings also have lists of similar problems. I realize that because I am researching this so intensively I might be wanting to "diagnose" everybody around me. Nevertheless, I believe we might be a "celiac family". I understand about gluten sensitivity being on a spectrum with celiac, that is, it might be a precursor to villous atrophy, but the medical community seems to have a disconnect. I get the idea that having a family member with a celiac disease diagnosis might change the way the doctor evaluates an individual's risk, or takes seriously their complaint. Conversely, the fact that "gluten-free" seems to be a common fad, seems to drain it of legitimacy.  If I do have celiac, I want it documented on paper.


So if I want to pursue this, I feel like I am in a "now or never" spot. The idea of going back to eating 4 slices of bread or the equivalent every day for testing is horrible enough right now, but if I don't do it now I will never do it. My primary physician will refer me to the local gastroenterologist if I want, but - nothing against that doctor - I feel like if I am going to go to the bother and risk of going through with the biopsy, I want it to be a doctor who will give me the best chance of an accurate result, be it positive or negative. Is there a doctor who is on the cutting edge of diagnosing - a doctor or clinic in the U.S. that specializes in celiac?  I think I read about a new test where they not only look at the intestine biopsy under the microscope, but they also can test it for the presence of the antigens even in villi that do not appear damaged. If there is such a doctor, I would have confidence that if my biopsy is negative, I can truly have faith that it is negative, and I will worry less about my family. If it is positive, I think my family will take the matter more seriously.


On the other hand, I can be over-analytical and maybe it's not worth pursuing. I already know gluten free is the answer. But 100% gluten free is no small matter. Yes, I can be more motivated if I get a positive diagnosis. Right now I have no idea which way to turn. I don't know if I should scrub out my kitchen, buy a new toaster, or if I should go buy some bread and get "glutenized" again. I don't want to directly disobey both my doctors, but I am not sure either of them really "gets" my need to get to the bottom of this.


Thank you in advance,