Doc Says Celiac - I'm Unconvinced

[zus888]

I had an endoscopy done about a month ago as a routine test for my Crohns disease. Biopsies of the duodenum came back suggestive of celiac. Blunted villi, along with other stuff. Naturally, I googled the biopsy results and found that the findings could also be due to crohns, milk intolerance and soy intolerance. At this point, the doctor suggested I go on the gluten-free diet. I insisted on a celiac panel and genetic testing before doing so. When the antibody tests came back, the doc said I was confirmed celiac and I asked for the report. I just got it today and find the ONLY positive antibody I had was a weak positive for gliadin IgG. I was negative for the transglutaminase and gliadin IgA. I was not tested for a total IgA, so I may be deficient in that. I'm still waiting for the genetic test results. So, after googling the blood test results, what did I find? That positive gliadin IgG is not a good indicator of celiac and could be caused by...Crohns! I plan to get a second opinion about this because I have no desire to "try out" the diet and see how it works for me. I am a mom to 3 young kids and don't want to disrupt my life on a hunch. Has anyone else had this issue or heard of it? I was sort of hoping the celiac disease would be my hope for a better future. I have heard of so many people who have had their other health issues resolve as a result of going gluten-free. I have so many autoimmune diseases that it's hard to keep track of them all. So, it would be great to have hope for a better future with the diagnosis of celiac, but I'm not convinced at all that I have it. The evidence is weak, especially since it could be a result of another disease I have been diagnosed with. Any help or enlightenment would be appreciated.

[mushroom]

Hello, and welcome to the board.

It is quite common to have more than one autoimmune disease and Crohn's and Celiac are seen together. What have you got to lose by trying the gluten free diet and seeing if it helps? I have heard that gluten free can help with the Crohn's also Responding to a gluten free diet would be a confirmation of the diagnosis. It will be interesting to see what genes you carry.

[hnybny91]

Oh honey, I think you are in denial. The thought of going gluten free for the rest of your life can be daunting though. You really should give the diet a shot. It could change your life.

[zus888]

My analytical side just can't be satiated. I'm a numbers kind of gal, and I really hate the idea of "try it and see." It is most certainly daunting - and costly. I just want to have a REALLY good reason to do this diet and the numbers are not convincing to me. I wouldn't even call them borderline at this point. Of course, I'm not a doctor or celiac specialist... Another thing I guess I should keep in mind.

I do appreciate your comments. Denial is a place I enjoy being!! It's such a happy place!

[ElseB]

A recent study identified four genetic variants common to celiac disease and Crohn

[Lisa]

A recent study identified four genetic variants common to celiac disease and Crohn

[Takala]

1. Symptoms

2. positive endoscopy

3. positive blood test

4. auto immune diseases associated with celiac

5. Physician tells you "confirmed celiac"

Geez, what more do you want ? You have no intention of trying out the diet ? You don't want to "disrupt your life on a hunch ?"

Only thing left is genes.

When your genetic tests come back showing you are a carrier (you have a pretty good chance of that!) , even if it is DQ 1 gluten sensitivity, which is not readily recognized in the Americas, what are you going to do ?

[GlutenFreeManna]

1. Symptoms

2. positive endoscopy

3. positive blood test

4. auto immune diseases associated with celiac

5. Physician tells you "confirmed celiac"

Geez, what more do you want ? You have no intention of trying out the diet ? You don't want to "disrupt your life on a hunch ?"

Only thing left is genes.

When your genetic tests come back showing you are a carrier (you have a pretty good chance of that!) , even if it is DQ 1 gluten sensitivity, which is not readily recognized in the Americas, what are you going to do ?

I have to agree. Those test results are much MORE than many of us on this board got. Many people have to try the diet WITHOUT any positive test results at all. From what I have read about the tests they can be false negative fairly frequently (like 20% I think) but they are very rarely false postive. Jump out of de nile and into a gluten free life boat. You might like it. You might be able to eliminate a ton of symptoms that are making your life raising 3 kids harder than it needs to be. What's harder? Avoiding certain foods and feeling great or ignoring you docotr's advice and being sick? It doesn't have to be more expensive either. There are lots of foods that are naturally gluten free. You don't HAVE to buy the gluten-free bread and gluten-free pasta. You could just switch to rice and potatoes instead, both cheap staples that are gluten free. Give it a try. This board is here to help.

[zus888]

1. Symptoms

2. positive endoscopy

3. positive blood test

4. auto immune diseases associated with celiac

5. Physician tells you "confirmed celiac"

Geez, what more do you want ? You have no intention of trying out the diet ? You don't want to "disrupt your life on a hunch ?"

Only thing left is genes.

When your genetic tests come back showing you are a carrier (you have a pretty good chance of that!) , even if it is DQ 1 gluten sensitivity, which is not readily recognized in the Americas, what are you going to do ?

1. No symptoms

2. Yes, one could say positive, but I have read that the results could also be due to Crohns, milk sensitivity, and soy sensitivity

3. Positive Gliadin IgG. NEGATIVE Gliadin IgA and Transglutaminase IgA

[unfortunately, many normal individuals without CELIAC DISEASE will have an elevated antigliadin IgG, causing much confusion among physicians.... If a patient

[mushroom]

Sorry, the genetic testing cannot even rule it out, because they are discovering additional genes associated with celiac disease all the time. These are tested for in Europe. The practice in the U.S. is to test for only DQ2 and DQ8 although Enterolab also tests for genes associated with gluten sensitivity (non-celiac) which many medical professionals do not recognize..

A very high percentage of the people on this board have had absolutely no testing whatsoever They have made no headway with the medical professionals, being (mis)informed that they "merely have IBS", and have decided on their own that gluten is a problem for them and follow a strict gluten free diet. And they heal. And they live normal lives. And they can live with the "not really knowing" because they do know, their bodies tell them so. If you would rather listen to test results than what your body tells you, that is certainly your prerogative and far be it from me to try to convince you otherwise.

[zus888]

I have to agree. Those test results are much MORE than many of us on this board got. Many people have to try the diet WITHOUT any positive test results at all.

Sorry, the genetic testing cannot even rule it out, because they are discovering additional genes associated with celiac disease all the time....

A very high percentage of the people on this board have had absolutely no testing whatsoever

Ugh. This is NOT the news I WANTED to hear!!! But I think that there is a lot to be said for anecdotal evidence, which is why I've turned to you all. You all have your own personal experiences as well as the experiences of others from this forum. As much as I don't WANT to have celiac or go gluten-free, having it gives me the hope for a better future because I've heard so many stories of other health problems disappearing as a result of going gluten-free. And there are no formal studies (that I'm aware of) that have suggested this to be the case. Nevertheless, there's plenty of anecdotal evidence out there. I would LOVE to have renewed hope that I could live to see my children have their own children!

Anyway, I really do appreciate your time and patience and honesty. I am stubborn and I like numbers. I like black and white. I don't like trial and error. So this whole situation is very ...um...uncomfortable for me. I don't like to base decisions without having all the data, and I obviously prefer to have pretty conclusive data. I didn't realize how many celiacs there are that don't get conclusive test results. Boggles the mind.

[Cypressmyst]

Ah yes but the most accurate and conclusive test equipment available is your own body. Far, far more accurate than anything made from the minds and hands of men.

Chrons is caused by the same thing Celiac is and Hypo Thyroid is, and RA is, and so on. Do the research into it and you'll see what I mean. No one can digest this stuff. The 2010 Celiac Forum is full to the brim with info and scientific references to this effect. Worth the $20 and your time for sure.

And for the record I was a Guinness/Pizza girl before going gluten-free. Eight months in and I don't miss either one. Food no longer controls my life and I am very much happier for it. What seems daunting now is not so impossible when you understand what gluten is doing to your body.

Best of luck to you in your research. This rabbit hole gets pretty deep.

[GFinDC]

Hey Zus,

You can also get an endoscopy done and have the GI take 5 or so biopsies of different areas in the beginning section of your small intestine. They can't reach all the way through the length (22 feet) of your small intestine so if you are lucky the villi damage will be in the beginning section and not a foot beyond where the endoscope cannot reach. Then the doc will send your biopsies off for a microscopic review by a technician and after a couple weeks you will get a results. If they hit a damaged area of villi then probably they will see it and say "hey, you have damaged villi".

The damaged villi "could" be caused by casein sensitive enteropathy, which I believe is very rare, much more rare than celiac disease, or a parasite or smoking too much pot. Oops, I made that last one up. I agree that soy is bad for people but I haven't read that it causes villi damage. Not saying that's wrong, it is nasty stuff for sure.

Unfortunately we don't have those nifty medical tricorders like Dr. Bones had on Star Trek to tell us exactly what the problem is. Medical doctors rely on somewhat reliable tests and guess work and education. The numbers you love so much are gathered by people trying things out and seeing what happens and writing down the results. No different than you trying the diet and writing down what your results are. Except you don't have to wear a white smock and get a government grant to do your self testing. And your results will be known in 3 months or so, maybe less vs years. You are such a lucky dog you! Woof woof!

I used to feel the same way about wanting things to make sense or be backed up by numbers so I am not making fun of you overly much intentionally. The average time to get diagnosed with celiac is usually listed as about 9 years in the USA. that's 9 years of mis-diagnosis by medical experts who have 8 years of training and various initials after their names. Going out on your own to figure things out is a lot more reasonable when you think about that.

Welcome to the board and I hope you try the diet as that is the best way to know for sure if gluten is bothering you. We have some members who never tested positive but had life changing improvements in their health after going gluten-free.

[SGWhiskers]

I'm a numbers and facts kind of girl too. 2.5 years ago, I was fortunate enough to get a concrete diagnosis with all the right numbers in all the right places. I researched journal articles and jumped on this board and asked a million questions. I've been reading posts and learning from the celiacs and gluten intolerant people here for 2.5 years. What I thought I knew from the journal articles and all the scholarly reading I could find gave me a nice start, but after reading the stories of people here and the speed of new research being published, I'm CONVINCED of a few things.

1) We (celiacs and medical professionals) don't know this disease well enough yet. (e.g., There were around a dozen new celiac genes identified in the past year or so that are not on anyone's genetic testing panel yet).

2) There are lots of people who suffer from the effects of gluten even though they tested negative or never got tested.

3) Diet (including gluten)can affect other autoimmune conditions. A good friend's RA was declared "in remission" after a year of gluten-free and rhumatologist prescribed paleo diet.

4) Everyone with a suspicion of celiac disease or gluten intolerance should try the diet (including dairy free) strictly for 3 months. (In your situation, you can consider it an ABA style experiment to get your factual results).

Now, my opinion is that the expense of gluten free eating often comes from additional food intolerances further restricting your selection while shopping, consumption of fun, but low nutrition speciality products, and a tendancy wo move from cheap processed foods toward healthier alternatives as we become educated about what is in our foods. With the exception of the first reason, these are choices that can be avoided if one wishes.

My opinion is also that those test results wouldn't have been good enough for me 2.5 years ago, but today with a different knowledge base, I would consider myself a confirmed celiac with those results and be on the gluten-free diet tomorrow.

You can also argue that if you have celiac, there is a possibility that one of your children has it as well. By going on the diet and then challenging after 3 months, you will be able to group your children in the 1:22 risk pool vs. if you lived in denial, your children would be lumped into the 1:133 risk pool. It seems to me that giving the diet a trial would allow you to make more educated choices about the medical care of your children. Yes, I said that for the guilt factor, but it has truth.

I hope that you decide to give the diet a very strict trial and that you stick around for lots of support and links to more articles. Sign up for the e-mails from the web site as a good way to stay up on the latest research.

[beebs]

I am a number and figures girl too. I came back negative on the genes test, and was supposed to have an endoscopy but was put off due to pregnancy. I went gluten free because it can be dangerous in pregnancy and thought I'd do a gluten challenge after and then get the biopsy.Anyhow last weekend I ate gluten after being gluten free for 4 weeks and I got sooo sick - it was so bad I ended up in hospital.

I still have to reconcile myself that I will probably never get a diagnosis...I HATE THAT!!! But I'm sure I'll get over it.

Good luck - although I have to say I would so much prefer Celiac to Crohn's as would most on here I'm sure. Gluten free isn't bad at all, you can still eat chocolate - wahoo. Also imagine controlling an autoimmune disease through diet alone.

Anyhow - good luck with it!

[zus888]

Thanks so much for sharing your knowledge and experiences! I will go gluten-free and give it a try. The older kids have been tested, and I'll be surprised if the younger of the two doesn't have it considering all her food issues, low weight gain, etc. I see the dietitian March 3rd and have some foods I want to "say goodbye" to in the meantime. March 4th, my BFF is coming for a visit, and we are going to get rid of all gluten in the kitchen (or at least properly label some of it), clean shelves, and come up with a way to organize it to prevent cross-contamination. We'll all go on it at first and then challenge (I thought I had to wait 6 months). My youngest cannot be tested with any accuracy yet, from what I understand since he's only 1.5-years-old. Once we figure out who has gluten issues and who doesn't we'll have to deal with having a mixed household.

Thanks again for all your kindness and patience. You all are a wonderful resource!

[modiddly16]

I haven't read through all of the responses to your initial post but I have a few things for you to think about... Do you feel crappy? Are you tired of feeling that way??

If so, how would a gluten free diet hurt? If anything, it could rule out a possible diagnosis or even *GasP* make you feel better!!!!! I remember when I was going through the process of being diagnosed that I'd do anything to feel better.

I would think that constantly being ill is more disruptive to your life than having to alter your diet, but that's just me.

[ravenwoodglass]

I would LOVE to have renewed hope that I could live to see my children have their own children!

Anyway, I really do appreciate your time and patience and honesty. I am stubborn and I like numbers. I like black and white. I don't like trial and error. So this whole situation is very ...um...uncomfortable for me. I don't like to base decisions without having all the data, and I obviously prefer to have pretty conclusive data. I didn't realize how many celiacs there are that don't get conclusive test results. Boggles the mind.

If I had waited for positive blood tests I would have been, as my present GI stated 'one of the many celiacs diagnosed by autopsy'. I am a sero-negative celiac and because of my negative blood tests my doctors dismissed the possibility and wouldn't even do a endo.

My children grew up watching their mother die a little more every day. The condition I was in and the impact it had is in my signature. I wasn't diagnosed until my kids were in their teens. That was 6 months after my 14 year old daughter came to me one morning and told me the family would understand if I committed suicide. It wasn't just me who was being irrepairably harmed by my not being diagnosed. It took a great deal away from my children also. I would give anything to have been given the positive tests results you have had and to have had a doctor even tell me to try the diet. You will be losing much more than you can imagine by refusing to give the diet a shot.

[cahill]

Going gluten free now is soooooo much more "convenient " than developing Leaky gut ,gluten ataxia or cancer ect.....

Going gluten free was the EASIEST part of this journey for me,,,,it is the complications and other intolerances that I am have trouble with,, not having a correct diagnosis/treatment (gluten free diet) about 40 years will do that to ya

[hnybny91]

I spent nearly four years sick and there was a point in 2010 that I didn't think I would make it to 2011. In 2010 alone I saw my GP, two Rheumatologists, two Infectious disease doctors, and one Cardiologist. None of them came up with Celiac & Dermatitis Hepeteformis. NONE OF THEM! I was diagnosed with fibromyalgia, ploy arthritis, mixed connective tissue disease, sjogren's (positive SS-B but no inflamation), vitamin deficiency, and hypocondriac.

I gave up wheat in January of this year just because I had heard it helped with fibro. After a few days I noticed my mystery rash (what I now now to be DH even though no biopsy) was considerably better. That is when I went to the internet and searched "wheat allergy." My jaw hung open as I read all the symptoms associated with Celiac Disease. It is the first time ALL of my symptoms have been explained.

Through that research I discovered that I needed to do more than just aviod wheat. I am now a little over a month in and I am finally able to blow dry my hair. Yes that's right, I consider somethinng as little as being able to blow dry my hair a cause for celebration. This has truely changed my life and I don;t give a ratss behind if anyone in the medical community ever validates my diagnosis.

Gluten free does not have to be more expensive. I figured out pretty early on that I did not the gluten free substitutes (bread, brownie mix, etc.) Just eat clean and natural and it may even be cheaper. Yesterday I started on the Paleo Diet because I am convinced that I have other sensitivities (dairy for sure) and want to eliminate nightshades, soy, corn, suger, lentils & all lentils. I also need to lose the 60 pounds I gained while sick.

Going gluten free will not harm you in any way. Give it a try.

[cahill]

You will be losing much more than you can imagine by refusing to give the diet a shot.

Truer words have never been spoken

((HUGS)) raven