Results Show Celiac?

[suzimarie06]

It has been several months since I was "diagnosed" with celiac disease.

My family and a couple doctors are now questioning if maybe I dont really have celiac though.

I have not been on the gluten free diet. I still get sick to my stomach and nausous now and then, but yet not as much as before and not as much as I feel I would if I really did have Celiac Disease.

Anyways, to try to figure it out, I requested my medical records from the gastroentologist.

All my celiac markers are negative. My small bowel biopsy was normal. Other than the fact that the gluten free diet seemed to help, the only thing pointing toward celiac was the positive DQ8 gene.

But it tells me that though the gene is positive in 96-99% of patients, it is not specific for celiac.

The gastroentologist couldnt definitly give me a diagnoses of celiac disease. Months back when I got the letter in the mail of the positive gene test, all it told me was that the gene for celiac was positive. I've been told by other celiacs that that means I do have celiac. so that was that, i had celiac disease.

Is it still possible, with everything else being negative, that I do have celiac disease?

after reading my medical records, I get the feeling that I dont have it and it was just easier to say I did b/c it was some sort of explanation. but now I just dont know what to do or what to think.

after i was "diagnosed" , they thought maybe my dad had it. he hasnt been tested, but he's been on the diet and it's helped him a ton. but after my brother was diagnosed with an esophagus condition, they are testing my dad for that, thinking that may be his problem, not celiac. so maybe i just have to wait to see how my dad's test goes.

b/c if he doesnt have celiac disease, i cant either right, since its genetic? maybe i just need to get a second opinion from another dr???

i have no clue anymore. any help or advice would be appreciated.

thanks.

[jayhawkmom]

Other than the fact that the gluten free diet seemed to help, the only thing pointing toward celiac was the positive DQ8 gene.

I'm a bit confused. If you were diagnosed with Celiac, why are you eating gluten? And, if not consuming gluten makes you feel better, why continue to eat it??

Another question I have is... if all tests were negative, how were you diagnosed?

If you have DQ8, were diagnosed with Celiac, and experienced improvements while maintaining a gluten-free diet, I'd say you have your answer. Celiac not withstanding, you could be intolerant to gluten - which requires the same gluten free diet as celiac.

Some folks with Celiac NEVER experience stomach pain. However, the damage to the intestines is still happening.... whether you FEEL it or not.

[Ursa Major]

The DQ8 gene is one of the two main celiac disease genes. The gluten-free diet was making you feel better. Your blood tests and biopsy could have been false negatives, as those are extremely common. The blood tests aren't all that reliable, and the biopsy is hit and miss (and often miss ). It is VERY easy to biopsy an undamaged spot in your intestine, even if parts of it are damaged. A negative biopsy can NEVER rule out celiac disease.

Your dad is responding well to the gluten-free diet. Why question that? Since celiac disease often causes reflux, that can cause damage to the esophagus. Your brother might want to try the gluten-free diet as well, it may help his esophagus to heal. I used to have an ulcer in the esophagus from the reflux. It went away on the gluten-free diet.

Nothing you have said convinces me that you don't have celiac disease. In my opinion, you would do well to get on the gluten-free diet asap. You may want to consider eliminating dairy and soy as well, to allow yourself to heal.

One question: What do you think makes you have nausea and get sick to your stomach? Before I diagnosed myself (thanks to ignorant doctors) I would be sick for a while with diarrhea or constipation, then feel better again for a while. It went in cycles.

What I didn't know is that my fibromyalgia was caused by celiac disease. As was the brain fog, the backaches, the psoriasis and itchy skin. The dizziness and reflux and eczema. And a host of other things that are NOT gastrointestinal.

Unless you try the gluten-free diet for at least six months, you will never know how good you might be able to feel. Just because you are not deathly ill (yet) doesn't mean that you aren't getting sicker. Undiagnosed and untreated celiac disease can trigger other autoimmune diseases as well. And if you do have celiac disease and ignore it, you will undoubtedly end up with cancer of the digestive system and die an early death.

I am not saying that to be dramatic, but because it is a proven fact that undiagnosed celiac disease will sooner or later cause cancer. My mother and grandmother died of cancer (my grandmother of stomach cancer when my mother was 20, my mother of liver cancer at the age of 66), and they had the same symptoms as me.

[fedora]

hi,

could you be more specific.

one, are you gluten free now? It doesn't sound like you are.

two, when you were gluten free, how long were you gluten free for? Was this before your diagnosis or after?

three, You responded to the diet, why didn't you stick to it?

The tests have false negatives,

You have the gene. This does not mean you HAVE celiac, but that you could get it

If your dad doesn't have it, that does not mean you don't. Celiac is triggered by something. It sounds like he is benefitting from the diet so I hope he sticks to it. It is possible to have two conditions at once, celiac and esophagus problems

It takes months to heal. Few people feel perfect right away. It can take weeks or months

Like Ursa Major said, symptoms can be cyclical.

It sounds like you don't want it to be celiac. I understand. However that is not reason enough to ignore the possibility. The true test is the diet. Why don't you give up gluten for at least 6 months and then see.

[suzimarie06]

actually fedora, i would be disappointed if i didnt have celiac disease. i'd rather not have to keep going to the doctor , trying to figure out what else could be going on.

as far as why i havent been on a gluten free diet, im not even going to get into that. i already know the kinds of responses i would get, no matter what i said.

thanks to those who might have helped.

[jayhawkmom]

as far as why i havent been on a gluten free diet, im not even going to get into that. i already know the kinds of responses i would get, no matter what i said.

Well, it IS a pain in the butt! That's a common reason for not sticking to the diet. I am totally guilty, there. I was waiting for "proof" that I have it, even with positive bloodwork! I didn't want to believe it.

I have suffered from reflux my entire life. I'm responding directly to this issue since Ursa brought it up. Once I went gluten free, the reflux disappeared. Of course, my doctor said it was because he put me on reflux meds. But, sure enough... if I consume gluten, I get wicked reflux action. I may not have gastrointestinal distress, brain fog, or any of the other tale-tell signs, but the reflux is horrific. No gluten = no reflux. And, my reflux was SO painful that it's simply NOT worth it for me.

Ok, I went off topic ever so slightly.

Why not give the diet another try? Give it a few weeks (6 months is good, as Ursa suggested) and then see how you are feeling compared to the way you feel now.

May I ask.... is there some specific reason why you must be "officially" diagnosed? I ask in all seriousness, I'm wondering if it's a free will vs. medical necessity issue, or an issue of health insurance, or some other such thing.

I know many who have truly needed the official confirmation, and others who are just fine without a true diagnosis being "on the books" so to speak.