My Test Was Negative, But The Diet Works Wonders?

[scuzy]

I have been reading a lot of posts on how inaccurate the antibody tests are. I am 21 and for the past few years I had been dealing with worsening diarrhea, so I finally decided to do something about it. The more research I did, the more Celiac looked like the culprit. I have read that the most common misdiagnoses is Irritable Bowel Syndrome, which I was just diagnosed with when my antibody test came back negative. But the fact that my Father and his Mother both have IBS, makes me believe more that we are all misdiagnosed, because Celiac is hereditary. I finally started the gluten free diet, and it is amazing. No more diarrhea, I am no longer lactose intolerant, which I know is a symptom of Cealic. But I don't have health insurance, so it's not like I can go get the biopsy done, and I'm not sure I want to start eating gluten again to pay more money to take the antibody test somewhere else. I am new to this, and the diet is working, it's hard and frustrating, but it beats having to run to the bathroom all day. I don't know anyone who has Celiac and was hoping maybe anyone on hear had some comforting words of wisdom? Or anything...

Thanks a ton to whoever can relate or give any advice.

Kristin

(O, I also have dimples on some of my finger nails, which is not a calcium deficiency, and was wondering if anyone knows if it could be related at all to Celiac?)

[mushroom]

Hi Scuzy and welcome to the board. I think you have come to the right place for help. I hope we can collectively provide that.

Yes, it is unfortunate that most celiac patients know more than their doctors about the disease; as far as I know IBS is not an inheritable condition (because they can't even define it to my satisfaction ) whereas celiac is a definitely identifiable disease and proven inherinitable. Unfortunately the identifiers they use do not catch all the cases of celiac, in fact maybe only a small percentage -- the research numbers keep changing all the time. But we do know it is an inheritable condition (you will not necessarily develop it just because you carry the gene, but your chances are greatly increased). This alone should ring some alarm bells with the docs with a father and his mother both diagnosed as having IBS, and now you???

The common wisdom today is that the blood tests and biopsy show a 20% false negative rate for celiac. Some doctors, upon negative testing, will just tell you to go away and be happy with your IBS ; the smarter ones will tell you to give the gluten free diet a trial and see if it works for you; in other words, you may be one of the false negatives. Many of those doctors will in fact give you a celiac diagnosis if you have a positive response to the diet and your symptoms go away. Patient is happy, doc is happy, all is good.

But some people do seem to need the piece of paper that says celiac on it. Many of us here are self-diagnosed after years of being told incorrectly that we had fibromyalgia and IBS -- well, actually some of us do continue to have some fibro symptoms, some of us are in denial about them, but we all know that gluten is a problem for us and that we should not consume it. We are happy enough with that because we feel so much better, our other symptoms lessen, sometimes go away, and we feel terrible whenever we get glutened. If you can live with this situation, then you don't need any more testing by anyone. You just live your merry gluten-free lifestyle (and have the hassle, I admit, of explaining to everyone you know why you eat the way you do - it comes with the territory.)

Now, that being said, it sounds like they just did the bloodwork and not the biopsy for you??? The biopsy is considered the gold standard of diagnosis - if you have the right intestinal damage you are definitely celiac, if you just have some abnormal antibodies you may or may not be... However, and it's a big however, it is possible to be negative on both bloodwork and biopsy, and still have problems with gluten - gluten intolerance, gluten sensitivity, whatever you want to call it. In order to have the biopsy you have to keep on eating gluten, and depending on how long you have been off it you may have to stay on it as long as two months, just to face the possibility of once again a negative diagnosis. And in the meantime you have suffered and done more damage to yourself. You are caught in a Catch 22 situation. So you can see if you can find someone to do the biopsy, or....

The other option is to order online testing from Enterolab. They will test you for gliadin antibodies in the stool (which hang around much longer, up to a year, than in the blood. They can/will also test you for parasites, GI bacterial overgrowth, candida overgrowth, sensitivity to dairy and soy, fat in the stool (which indicates you are not digesting your food properly) and they will/can tell you whether or not you carry a gene or genes for gluten sensitivity and/or for celiac. They cannot tell you you have celiac, but can give you some strong indications. But insurance does not cover this testing; it is out-of-pocket.

So now you have some different modes of approach and you will have to think about it and figure out what is right for you.

I hope others will chime in with things I have not covered or differences of opinion.

[crampy girl]

I have been reading a lot of posts on how inaccurate the antibody tests are. I am 21 and for the past few years I had been dealing with worsening diarrhea, so I finally decided to do something about it. The more research I did, the more Celiac looked like the culprit. I have read that the most common misdiagnoses is Irritable Bowel Syndrome, which I was just diagnosed with when my antibody test came back negative. But the fact that my Father and his Mother both have IBS, makes me believe more that we are all misdiagnosed, because Celiac is hereditary. I finally started the gluten free diet, and it is amazing. No more diarrhea, I am no longer lactose intolerant, which I know is a symptom of Cealic. But I don't have health insurance, so it's not like I can go get the biopsy done, and I'm not sure I want to start eating gluten again to pay more money to take the antibody test somewhere else. I am new to this, and the diet is working, it's hard and frustrating, but it beats having to run to the bathroom all day. I don't know anyone who has Celiac and was hoping maybe anyone on hear had some comforting words of wisdom? Or anything...

Thanks a ton to whoever can relate or give any advice.

Kristin

(O, I also have dimples on some of my finger nails, which is not a calcium deficiency, and was wondering if anyone knows if it could be related at all to Celiac?)

I have been suffering since Age 18 when my first bout hit after eating a box of ritz crackers. I was told I had ibs too and about ten years later discovered I was lactose intolerant. My dad suffered from gi distress too. Well I was having cramps after eating cereal by noon and finally figured it out, so I stopped all gluten, and guess what, I no longer have symptoms!! I just changed my diet 6 days ago. Amazing difference. I was taking 3-4 levsin a day and spending 3 hours a day in the bathroom!! I too tested neg for the initial screening, but my GI doc wanted to do the small bowel biopsy a year ago. I declined, being an md myself and knowing about the potential complications. I dismissed gluten as a culprit a year ago, thinking it was a Caucasian disease... I am spaniard. I was going to post this when I saw your post, and I believe after reading several reasearch articles that there are false negatives, and if the diet is working for you, stay on it. But consult w nutrition expert since you no longer eat fortified wheat, some vit supplements have gluten too. I am brand new myself, but this website is full of info. If anyone has advice for both of us, it is welcomed!!

[Skylark]

Hi and welcome. Celiac is tricky to diagnose in some people, and there are also folks that test negative in everything but going off gluten makes them dramatically healthier.

I was never tested at all. I went on an elimination diet expecting to find food allergies and figured out I was gluten sensitive. I spoke to a doctor who said that if I was willing to stay on a real celiac diet (and not cheat) that there was no real reason to be tested. He also said that my gastritis and IBS going away off gluten was pretty much diagnostic for celiac. Like you, I had the fingernail ridges. I also have thin tooth enamel, had low iron, autoimmune thyroid disease, canker sores that went away off gluten, and a bunch of other signs of celiac.

I hope someday they come up with a test that doesn't involve poisoning myself but until then I'm not worrying about it.

[Marz]

Welcome Well done for finding your problem so quickly, you've probably saved yourself from a lifetime of other issues that usually come along with gluten intolerance

I've also had negative blood work, but the ultimate test I think is feeling better on the diet.

Ridges on fingernails - some experts on the forum would have more information, but I'm pretty sure that's some sort of deficiency, possibly vitamin B. You may want to take some vitamin supplements for a few months until your body heals itself.

[cassP]

(O, I also have dimples on some of my finger nails, which is not a calcium deficiency, and was wondering if anyone knows if it could be related at all to Celiac?)

yes- abnormal dents in the nails or teeth can be related to celiac.

[scuzy]

Thank you guys so much. I am so glad I found this site, and did the research to find out I am gluten sensitive. I had been pondering the idea for about a year before I went on the diet. I thought the only thing that could keep me on the diet would be a positive test, but it turns out that not having all the symptoms is worth the diet. I still want to know for sure, but since my only options of knowing are to torture myself for a while and pay a ton of money, that will have to wait a LONG time. Although I was reading one of the articles on this site about a tax deduction: https://www.celiac.com/articles/279/1/Tax-Deduction-for-Gluten-Free-Foods-as-a-Medical-Expense-for-Diagnosed-Celiacs-Only/Page1.html. I know it's just money, but being a college student and spending a TON more money to go gluten free is hard. The only thing is that you have to have a medical diagnosis to qualify. Has anyone heard of, or done, the tax deduction?

*Although I'm not sure it's worth the torture

Thanks a lot everyone and sorry I kind of went off topic

Kristin

[Skylark]

There's a couple things about deducting medical expenses. First, you have to be itemizing deductions in the first place. For a student it is unusual that you would itemize because your tax deductible expenses are generally less than the standard deduction. Second, you can only deduct the part of your medical expenses that goes above 7.5% of your adjusted gross income. As you get out of college and into a position where you might itemize, it would be unusual that you would have high enough expenses to deduct unless you had a major illness or were paying for your own health insurance.

By the way, it shouldn't cost a TON more money to go gluten-free unless you were living on ten-cent ramen noodles. Produce is the same, you can get a big bag of rice or potatoes cheap, and you can get plenty of protein from beans, peanut butter and tofu on days when you don't feel like spending extra for meat. I ate a lot of peanut butter and lentils in college. Gluten-free only gets expensive if you buy the expensive gluten-free breads and cereals.

[scuzy]

Well I do (did) love ramen noodles... I guess since I'm still new at gluten free, I am still craving some of the things I used to eat (or can't have). I am getting better though. Thanks for the advice about everything.

[EJR]

Hi All,

I am 64 years old and have suffered increasing food intolerances for the last 7 years. It all seemed to start after taking Ciprofloxacin and developing a rectal yeast infection that lasted for over a year. Eggs were the first to go and then dairy. Both produced rapid explosive diarrhea and gas. My gall bladder was removed 3 years ago and then the diarrhea and digestive problems became overwhelming. I lost 50 pounds (that I couldn't afford to lose and began to wonder if I would even live to see my 65th birthday). The biopsy done just prior to the gall bladder surgery was negative for celiac disease. Eventually I did have the Enterolab testing done and antibodies to gluten were found in my stool test. Also I carry one of the main celiac genes. I started a gluten free diet but made many cross-contamination mistakes and also would give-up after 3 or 4 months and try toast, etc again. I wasn't seeing any improvement. Well, the good news is that in December of this year after really gluttening myself over the Christmas holidays I decided to go back on the diet and to stick to it religiously. And finally the improvements started to happen. I no longer have diarrhea, the constant bowel pain has lessened greatly and the variety of foods that I can tolerate has greatly improved. I have now gained 12 pounds and know without a 'shadow of a doubt' that I have done the right thing.

I did see an Internal Medicine specialist last month and she said that in her opinion "a positive response to the diet is much more important than any testing that doctors can do". She indicated that the tests have many false negatives. She thought that my age contributed to my slow response to the diet but she did say that she always tells her patients that if they want to try a gluten-free diet they must stick to it religiously for AT LEAST six months. She counsels them not to necessarily expect immediate improvements.

Just thought that you might find my experience helpful.

Joyce

[sb2178]

I second the rice, potatoes, and lentils route. The little corn tortillas are also cheap if you get them in Latino neighborhood, and sweet potatoes are wonderful. You can make corn muffins fairly cheaply with a little effort, and there is fortunately flourless chocolate cake for those times you need a splurge.

Well, I had a negative biopsy and two rounds of blood work with mixed results. The diet showed itself to be the answer fairly quickly. I would have preferred a clear diagnosis, because it's a little uncertain how to proceed and present when you have a semi-recognized condition. Like, I'll probably have to change PCPs, and hopefully whoever will be cooperative in follow-up blood work. I'm also struggling a little to get my family to take the diagnosis seriously in terms of their health (not mine, they let me cook carefully for myself quite happily).

A clear diagnosis may be helpful if you ever have children and they develop problems-- the pediatrician would hopefully be up to date on relatives' diagnosis and risk. But, if your relatives are diagnosed (all that IBS) that would fill in the blank.

I believe iron deficiency can also cause nail ridges. Have your ferritin checked-- taking iron supplements can be dangerous if you don't need them. Or just go to donate blood and see if your hemoglobin is too low, but ferritin is more reflective of overall iron deficiency.

[scuzy]

Thank you guys for sharing your stories and your advice. According to the doctor my Iron is fine??? So I'm not quite sure what could cause the dimples. Someone said it could just be a side effect of Celiac. Maybe that means it will go away after 6 months on the diet. Hopefully .

[cassP]

Thank you guys for sharing your stories and your advice. According to the doctor my Iron is fine??? So I'm not quite sure what could cause the dimples. Someone said it could just be a side effect of Celiac. Maybe that means it will go away after 6 months on the diet. Hopefully .

or maybe it's not enough calcium absorption. Celiac messes up the absorption of many vitamins and minerals... and also can mess with the thyroid... in the thyroid i believe we make hormones that control the calcium balances with our bones

[mushroom]

I also had indentations on my fingernails - it goes away as we get healthier