Do I have celiac disease?

Question

I have had the blood work and the endoscopy and they were both negative for Celiac. Half of my family has this disease. I have a lot of upper abdominal pain, nausea, vomiting, diarrhea. I went on the gluten free diet for a while and I felt better. My doc said that I have Irritable Bowel Syndrome. I talked to my cousin who is an RN and she said they all say that if they dont know exactly what is wrong with you and when I brought up the Celiac thing to my GI doc again he said I def dont have it and that pain is not associated with Celiac. I know it is because My Aunt and my Uncle had a lot of pain as well as my cousin. What do I do??

Answer 1

Question to you: Did u start the Gluten Free diet prior to testing? If u did, then u messed up the test (inadvertently.)
There are many reasons to fail a test even if u do have Celiac:
Many Celiacs do not carry the IGG and IGA antibodies tested in the blood work.
Lab or doctor error.
The GI who read the endoscopy is not familiar with Celiac and did not read the test right.
Or u did not consume enough gluten.

I would suggest that u get genetically tested since so many family members have it. If u have the genes then it is VERY safe to say u may not have af ull blown case yet but its coming, so going GF will be your destiny. Also, u do not need to be eating GF for the genetic testing. Its about 200-300 bucks I think but its done at home, no worries with insurance.Try the lab enterolab. I hear they are ok.

I would suggest also seeing another GI. Go to www.csaceliacs.org. Click "Local Support." Look up your area and contact that support leader. They should be able to tell you a good GI doc in your area who knows Celiac, and u can get with them about going to meetings and getting support.

if the GF diet helped and u have a family history of Celiac, its HIGHLY likely u do have it. U may have been tested too early, the damage to the villa may not have been bad enough yet.

Best ofl uck and feel free to email me for more help.

Answer 2

There's an asymptomatic form of celiac! which means the tests they use to see if you have it don't work. IBS is almost always the first diagnosis for celiacs. (see this article: http://www.glutenfreedietbook.com/articles/19.html )

If you have lots of family members with celiac disease, you have symptoms that go away when you stop eating gluten, and come back when you eat it again, you most likely have *at the very least* some form of gluten intolerance and most likely celiac.

Let me put it this way, would you rather trust your common sense, which may mean you protect yourself from cancer caused by eating gluten, or a negative result on some test that is well known not to be definitive?

There's a multiple choice quiz here: http://www.glutenfreedietbook.com/factsheet/ It's based on many studies into gluten intolerance of various types. If you take it, it will tell you whether it is likely you are gluten intolerant (which may mean celiac, or may mean something else). To be honest, though, by your family history, I would say it's very likely indeed.

Answer 3

Get a second opinion. If staying gluten free makes you feel better, just do it, whether you are diagnosed with celiac or not. Get tested for Epstein-Barr Virus (symptoms are similar -- that is what mine turned out to be). There are several 'bugs' like giardia that can do this to you. Food allergies (not just Celiac) can do it. If you have been on antibiotics for any amount of time, that can do it, since it destroys the GOOD bacteria in your colon as well as the bad.

Answer 4

My wifes mother has coelic disease- but her 3 offspring do not- dont worry.

Be a detective ! write down all the foods you eat and note symptoms- try coeliac type diet and note same see if theres any change- wouldnt trust doctors they know far less than they think they do.

Answer 5

tell your docor that you want a genetic test. If he says it isn't necessary tell him that you would rather be safe than sorry. And if you do have it...get a new doctor.pronto.