Possible Celiac Or Gluten Intolerance - Confused!

[IngridBeth]

I am so glad to have found this forum! Okay, quick history: I was dx in 2003 with Fibromyalgia, had that dx confirmed by several docs and a rheumy (specialist). Been through he** with trying different medications over the years but finally got some relief with Lyrica. Still have lots of issues though. I noticed by trial and error I feel way worse when I eat bread or pasta or cookies, things like that (DH noticed this about me as well). I have had digestive problems for so long I have pretty much always been bloated and had other issues like that (oh and I was dx with Irritable Bowel Syndrome back in '94), but I noticed my exhaustion and pain were aggravated by things like bread. I don't know why it took me so long to mention it to my GP! But I finally did on Thursday and was kind of shocked when he said it could be Celiac or a gluten intolerance. I don't know why I was shocked - but when I started doing research on line I realized this could actually be a key to so many of the problems I've had over the year. I know some of you will understand when I say I so hope this is the answer, because I have felt awful for so long that to have a way to get better would seem like a miracle!

Anyway my doctor took blood, but I do see from reading here and on other sites that those can be inconclusive. I also stopped eating gluten that day - it seemed and felt like the right thing to do. I felt good for the first day then had some strange symptoms but I suppose that could be withdrawal? Bad headache for two days, now the runs, etc.. My first question is, could having those symptoms be diagnostic in itself? Also, if blood tests can't be trusted, what do I do when the results come in if they are negative? In my gut (no pun intended) I do not want to go back to eating gluten, I feel pretty sure my body does not like it to put it mildly! Also I have heard you may be encouraged to eat gluten again for a biopsy. At this point you could not pay me to eat a piece of bread. That may not sound reasonable but to me bread = pain....I kind of don't want to hit myself over the head with that hammer again!

I guess I am just wondering at what point do you know whether to believe blood tests, and do the tests only show if you have Celiac or will they also show gluten intolerance or wheat allergy?

Thanks in advance for any advice. I can see this group is a wealth of experience and information!

[lucia]

hi Ingrid Beth,

I'm so glad you found us. I hope you find that this is the beginning of healing for you. You ask lots of great questions, some of which the medical profession doesn't know how to deal with (yet).

You'll find a lot of people here have had similar experiences as you with tests for celiac/gluten intolerance. Both the blood tests and the endoscopic tests have a high rate of false negatives. If you test positive, then you have the condition, but testing negative doesn't mean you can't have celiac or gluten intolerance. In the case of the endoscopy, it's easy to overlook damage to the small intestine when this organ is 23 feet long and its flattened surface area is equal to that of a tennis court. Besides that, a lot of us - like you - are not willing to subject our digestive systems to gluten as a part of the testing process, so that means that many of us do not have a formal diagnosis.

The good news is that a sensitivity to gluten is easy to identify: if you eat gluten and it makes you sick, then you need to avoid it. I know that some people believe that a strong withdrawal to gluten indicates sensitivity to it. All I know from my own experience is that withdrawal is a very real thing, and it sounds like you may have experienced it. Now that you're through withdrawal, you'll find that if you accidentally consume gluten, you'll be able to tell because your symptoms will hit you again. The longer you're off gluten, the more sensitive you'll become to it.

There is a lot of controversy in the medical community about forms of "gluten sensitivity". Doctors are in agreement that a condition exists that they call celiac where an endoscopy shows damaged villi in the small intestine. Medical researchers are now trying to figure out what is going on in the body when it reacts to gluten but damage to the small intestine is not visible. Some people never even have gut reactions, but they will have neurological symptoms. I'm including a link to a NYTimes article (below) that talks about the current thinking around "gluten sensitivity".

Open Original Shared Link

While all this is interesting, you're right that, in the end, what really matters is how our bodies react to gluten.

Also, fibromyalgia is a condition that is often seen with celiac. I was diagnosed with fibromyalgia years ago. I was lucky since my fibro responded to changes in diet and exercise. I'm so sorry that you're suffering from it. Hopefully, you can find some relief here.

[Skylark]

Hi, IngridBeth

If it hurts you, don't eat it! Some doctors encourage people to get a "diagnosis" by eating gluten to get all the tests done. If your body reacts really badly to gluten and you plan to go gluten-free anyway, there is no point in torturing yourself.

Some people do notice gluten "withdrawal". I felt so much better off gluten it was never an issue.

[IngridBeth]

Thank you for the replies! I am so glad to know that others opt not to eat gluten again for further testing....I was afraid that nobody would understand that choice but it's very affirming to know I was wrong!

One question: What exactly goes on inside our bodies when we stop eating gluten??? I stopped last Thursday and have had the strangest physical things going on since then! I felt good, then awful, then better, then terrible, then great, now so-so. I had headaches and terrible "d" and other symptoms, and on top of it all my stomach hurts when I have dairy which I thought I could tolerate before, and even after gluten-free sugar (like semi-sweet chocolate chips). What the heck????

I am still waiting on blood test results but am so anxious to feel better after years of feeling horrible. I just want to know I'm on the right track (I am pretty sure I am but think I'm still missing something....). It's so strange to realize that I have been telling people for the past year, "I feel better if I don't eat bread and things like that," but I never mentioned it to my doctor until last week. What was I thinking?

[IngridBeth]

Also why did I have horrible stomach pain and diarrhea after just eating what I thought was a gluten-free lunch? I am confused and frustrated - thanks for listening

[Skylark]

Ow. Bummer.

If you're sure it was gluten-free, pay attention to casein from milk, lactose and soy.

[mushroom]

Going gluten free is not like flicking a light switch. The gluten has done damage to your body if you are celiac or gluten intolerant, and that damage has to heal before you feel 100% better. You should notice a gradual improvement as time goes by, significant improvement after 1-2 months, but depending on how much damage, full healing can take up to two years. As Skylark noted, you also have to watch out for other intolerances. If you have intestinal damage you will probably have problems digesting lactose for quite a while, and then other intolerances may appear which have been masked by the gluten response. These are most likely substances that have also penetrated the leaky gut wall and made their way into the bloodstream where your body has attacked them with the same autoimmune response as with gluten. Unlike gluten, however, you may be able to add them back into your diet later.

But going gluten free is like turning off the tap that is making the antibodies and destroying the gut. Once the water stops flowing healing can commence.

[GlutenFreeManna]

Ow. Bummer.

If you're sure it was gluten-free, pay attention to casein from milk, lactose and soy.

I second this. Many of us can't tolerate dairy at first because the villi in our small intestines has been damaged from the gluten. The villi are where the body produces lactase, which breaks down lactose in milk, cheese, etc. You could be lactose intolerant for now. It may get better if you avoid dairy for a long time. Some people have problems with casein instead. You probably want to avoid soy too because of it's effect on the thyroid. If you google soy and thyroid disease all kinds of links will pop up telling you how bad soy is for you.

Another thing you need to check with your gluten free meals is that you have replaced or sufficiently cleaned all your cookware. Non-stick pans are pretty much impossible to clean. Gluten can get in the scratches and contaminate your gluten free food. Colanders are also hard to clean because of all the little holes.

[IngridBeth]

Thank you for the explanations - it certainly feels like I cannot handle dairy right now and I was not expecting that! I am feeling better today so far! I am finding out what my system does and does not like. I can see this is a bit of along process but so worth it. I am finding out that things I've had for half my life, things I long ago gave up hope of reversing (like asthma, major sleep problems and nightmares, etc) could be related to this. The hope of feeling better - much better - than I have in ages is such a bright light at the end of the tunnel....

[Emily22]

Hello everyone!

I am new to this forum and I have been recently diagnosed with gluten sensitivity. I had a genetic test done and stool testing as well. The thing I am confused most about is what my results mean exactly. My fecal Anti-gliadin IgA was 49 units, fecal Anti-tissue Transglutaminase IgA was 11 units. My interpretation of this was that I have an autoimmune reaction to transglutaminase, secondary to dietary gluten sensitivity. What does this mean? Also, I have two copies of a gene that are turned on and they are: HLA-DQB1 Molecular analysis, Allele 1 0303 and HLA-DQB1 Molecular analysis, Allele 2 0502. So although I do not have the main HLA-DQB1 0201 or 0302, I still have two copies of a the gene, just not the main genes. My question is what does all of this mean? I don't really understand it. Recently going gluten free I have experience my period being 2 weeks late and I have not got mine this month yet (already 2 weeks late), and a lot of other problems. I was diagnosed in May with Chronic Fatigue and Lyme Disease. If anyone has any insight into any of these things I would greatly appreciate the help. Thank you.

Emily