Very Confused - What Do I Do Now?

[Lock]

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,

Lock

 

[AlwaysLearning]

Being in the situation that you are, primarily gluten free already and dreading the retox, I'd look into some of the possible testing that may be available in the future. Shorter retox periods, more reliable results based on different markers, and blood tests rather than invasive endoscopies and biopsies are all being talked about. Check out the publicity and publications section on the forum. A few links have been posted  fairly recently so you shouldn't have to dig back too far.

[1desperateladysaved]

You put it well, I felt most of those things.  It really sounds like you are convinced you need that positive test result for family and yourself to take it seriously.  I recall seeing celiac everywhere and being analytical also. 

 

I have used nut milks, coconut milk, and rice milk to replace dairy.  I do alright with it.  I do avoid soy, but I use eggs.  I hope duck eggs will work for you.  Quail eggs could be an option too.  I see these at health food stores.

 

I didn't pursue testing.  I had already quit eating gluten for three weeks, noticed a clear response to the diet, and got a genetic test.  I am super-sensitive and returning to gluten seemed unthinkable to me.  My genetic test was overwhelmingly positive and I took it to the MD.  She observed I looked 5 months pregnant, heard how the diet had changed me, and told me that I had celiac disease and should never eat gluten again.  Since I found my small intestine was tender to the touch.  My nutrient levels were Kaput in spite of being highly motivated to only eat a large variety of good food.  I had multiple food intolerances.  I learned that I had symptoms of celiac possibly from early childhood.  I believe you would have to find just the right doctor to cooperate with your diagnosis like this.  I have appreciated help from an MD, Chiropractor,  Osteopathic Doctor trained in Functional Medicine, and Functional Medicine nurse practitioner.  I have used supplements and diets to great advantage.

 

Best wishes for your future health,

Whatever you chose,

D

[cyclinglady]

Twelve years ago, my husband's doctor and my allergist recommended that he go gluten free.  After a year of struggling and finally realizing that he liked feeling good, he went completely gluten free.   He has never been tested and won't even consider getting tested.  Why?  The proof is in the diet.  

 

In January, I went in for a routine colonoscopy.   Gastro took a look at my chart and saw Hashimoto's Thyroiditis and Anemia.  Wanted to do an endoscopy/biopsy for celiac disease.  What?????   No way!  Both of us having to go gluten free?  Blood tests were mildly positive and the biopsy showed moderate to severe damage.

 

So, I have informed my automimmune/allergy suffering family.  So far, my mom who has thyroiditis and fibromyalgia was tested, and she was negative.  So, even though I thought that she must have celiac disease, it appears that she doesn't (she's not deficient in anything either).  I'm hoping other siblings will be tested.  If your daughters have celiac disease, then encourage them to get tested.  Even if you definitively had celiac disease, they still might not get tested or would refuse to give up gluten.  (My siblings are still balking....)

 

It is a bummer about having additional intolerances (milk, egg, soy), but so many of us do (I've known about mine for over 15 years and they are: eggs, milk, garlic, mushrooms and nuts!)  You'll work around them.  You might even gain some of them back!  

 

I wish you the best.  It's a tough decision to make.  

[Lock]

Thank you so much for your responses. I already feel better knowing I'm not alone. There seem to be a lot of confused people coming here for help.

I feel guilty for feeding my children wheat all their childhoods, having no idea what was going on with their health problems. I can remember both of them having daily stomach pain and the pediatrician telling me they are probably just trying to get out of going to school. To get the older one's ulcer diagnosed, we had to travel out of state to a specialist who did a simple x-ray which showed the ulcer, and cured her with a month of antibiotics. This was back when not every doctor accepted that ulcers were caused by H-Pylori and not "excess acid". And apparently nearly nobody thought a child could get an ulcer. Now I think probably the reason she was susceptible to the bacteria was a damaged system due to gluten.

AlwaysLearning, I love your name. I recently told someone that the most important value in my life is that I am always learning. I will check out those links. The positive thing about all this is that there is a whole world of information I have not explored yet, information that will provide answers to a half century of my suffering. I am looking forward to researching this and redesigning my life without gluten. I am not too old to turn around completely and from now on might end up being the happiest years of my life.

1desperateladysaved, your story is very much like my own. I think I had symptoms from early childhood too. I can remember President Kennedy's physical fitness program being implemented in my school when I was in the second grade, and I remember wondering why I was so exhausted and in so much pain while the other children all seemed fine. Now I look back and realize the government was pushing situps on me while at the same time telling me bread was the biggest part of the food pyramid.

I always tended toward anemia from childhood, but never so much the doctors did anything about it. "Low side of normal" was common for me. I also had symptoms of hypothyroid. To push someone slightly anemic and possibly hypothyroid to do physical exercise is just cruel. No wonder I felt like PE class was torture. And every day I ate cereal or French toast for breakfast and had a bagged lunch containing a sandwich on white bread, or walked home to eat macaroni or noodle soup for lunch. I can remember feeling mentally fogged up and exhausted sitting in class. I had trouble socializing and fitting in with the group which looking back now I think was also a gluten-caused anxiety disorder. But of course when I tried to get help for all this I was brushed off by parents, teachers, doctors - told nothing was wrong with me except maybe laziness and I just needed to buck up. On top of it all, I had constant attacks of sores all over my face which did nothing good for my social life, but now I see was an obvious sign of a malfunctioning immune system. My entire school experience was nightmarish.

cyclinglady, your story is amazing! My mom's thyroid has quit completely, and my dad has been dead several years, but since I have a double dose of the genes I know they both had at least one, and I am connecting dots with their health too. This is an amazing journey of discovery. I'm fighting the tendency to blame everything on wheat, but nevertheless, my life has been full of questions, and this is the first time I have felt like I have a real, logical, scientific explanation for it all. I feel like Einstein would have felt if he had discovered the Unified Field Theory. Ha ha ha ha!

Thanks so much to all of you for supporting me. I have a lot of work to do and tough decisions to make but for once in my life it feels purposeful and in the right direction.

 

[AlwaysLearning]

This is an amazing journey of discovery. I'm fighting the tendency to blame everything on wheat, but nevertheless, my life has been full of questions, and this is the first time I have felt like I have a real, logical, scientific explanation for it all. I feel like Einstein would have felt if he had discovered the Unified Field Theory. Ha ha ha ha!

I totally feel the same way. I say go ahead and blame the gluten for everything. I can't think of one medical problem that I've ever had that wasn't caused by it, either directly or as a result of another problem it caused.

And it makes it much easier to forgive family for bad behavior when I realize that they could just be in the middle of a gluten reaction, though I suppose I can still blame them for refusing to get tested.

[Lock]

My decision... I'm going gluten free.

 

I LOVE my doctor! I saw her yesterday and she told me that despite the negative blood test, she thinks that I am probably positive and that the test was a meaningless negative, and that while if positive the test is reliable, that's not so when it is negative. This proved to me that she understands about the specificity of the deamidated gliadin tests. We talked about whether I should go for the intestinal biopsy, but she said that with my history, symptoms, and the other tests which were positive she does not think it is necessary. She is convinced on just the evidence we have so far. So she says I need to go 100%, decontaminate everything, gluten free. She wants to see me back in several months to evaluate how I'm doing.

 

to AlwaysLearning, LOL about your family. As far as mine is concerned, I think they are watching my situation closely and maybe it will push them to get tested. But I decided that putting myself through a biopsy just  because I wanted to "prove" to them we are a celiac family is a stupid reason.  I can't stand this any longer. I am in so much pain and fatigue. I need to start getting myself healthy right now, or I feel like I am literally going to die. The DNA alone is proof enough they could all potentially have Celiac disease. The genes are not merely gluten sensitive genes, they are Celiac genes. If any of us do not have villous atrophy now, we could at any time in the future. There is simply no good reason for me to delay any longer taking care of my own health. But for my family, the ball is in their court, I've told them what I know, I have to back off and let them take responsibility for their own selves now.

[cyclinglady]

Good for you!  

[Lock]

Good for you!  

 

Thank you!  Now I will change gears and begin de-glutenizing my life.

 

The kitchen?

 

The grocery shopping?

 

The lotions, creams, shampoos?

 

The prescription pills?

 

Eating out in restaurants?

 

Talking to my family about cross-contamination?

 

And on and on... this will be a full time project!  From now on I will probably be posting in the recipes, post-diagnosis, etc. sections. It feels so good to have made a decision and to be moving forward!

[nvsmom]

Good luck!  

[tinylittlepotofjelly]

Good luck! Thank you so much again for all the helpful answers you have given to my questions. I wish you good health very soon!