Medical Diagnosis Of Celiacs Vs Diet Response

[tinap]

I know there are alot of you out there that have been diagnosed with celiacs in a variety of ways.

Here's my background - I have a 5 year old with celiacs - positive diagnosis by blood test and endoscopy. I have many of the symptoms of celiacs - which seem to be getting worse (i think because we eat gluten-free meals at home so i eat substantially less gluten but when i do eat gluten i feel real bad). I've had a negative endoscopy and my GI will not give me a blood test because i cant have celiacs - since he's already given me the ultimate test of diagnosis. Whatever.....

Are there advantages of a medical diagnosis vs just a dietary response to gluten-free eating?

For example - with a medical diagnosis is there a problem purchasing life insurance? Do you get better medical treatment for the other disorders associated with celiacs.

And the reverse for a dietary response.....health insurance providers dont know you have an auto immune condition. For women - no additional concern by your dr. that you may develop osteoporosis due to malabsorption so you cant get a bone density test done.

I'm going gluten-free 1st of the year but if it makes a difference - I will insist that my general practitioner give me the blood test.

Any suggestions?

[CarlaB]

I know there are people on this board who have been denied health coverage due to a celiac diagnosis. Some docs will respect a dietary response. My ob/gyn does and runs blood work on me during my regular visits to see how I'm doing. I would think you could get your doc to test you for osteoporosis based on dietary response. If he won't, you might find an article supporting your position to respectfully give to him to show how important it is for you to have it and supporting dietary response as being a valid diagnostic tool.

Biopsies can prove celiac, they cannot rule it out.

[chrissy]

our ped gi told me that our family needs to be tested every few years. obviously you or dad (or both) carry the celiac gene, so you could develop celiac at any time----regardless of how good the test was that your gi did.

[tinap]

I should have mentioned that i know for a fact the celiac gene came from my family. Since my daughters diagnosis, my sisters daughter has also been diagnosed.

I appreciate the information about periodic retesting but I cant wait a few years to get retested. The mental fog is making me crazy.

[par18]

If you have a child with Celiac and you have symptoms I see no reason why you would want a diagnosis before starting the gluten-free diet. I would save the money in case you don't respond to the diet (I think you will though) to test for whatever it might be. If you had been in a situation where no one close to you ever had symptoms or the actual illness then I would suggest the testing. Do you think you would have a problem sticking to the diet if you don't have a positive diagnosis? If not then get to it and don't look back.

Tom

[happygirl]

It really varies from doctor to doctor. I would say that yours is not educated about Celiac and would find a new one.

You said, "I'm going gluten-free 1st of the year but if it makes a difference - I will insist that my general practitioner give me the blood test." This will be in vain, because you have to be eating gluten for the tests to be accurate. If you are gluten free, it has nothing to test for (Celiac reactions occur when gluten is ingested...so once you are gluten free, then your numbers should theoretically return to normal)

Celiac (not Celiacs) is a strange disease .... can be frustrating! There are some who never test positive but know it bothers them....and they just keep it out. It might be helpful to find a doctor who has other patients who aren't certified by testing. On the other hand, keep eating gluten if you want the testing done!

If you have regular insurance through work, then the diagnosis is not usually a problem. it is usually only a potential problem for those who buy private insurance. I've been on 3 regular/work insurance plans and it hasn't changed my treatment or rates.

[Ursa Major]

Tina, the testing for osteoporosis depends on the doctor. I was diagnosed entirely on dietary response, and my doctor was very happy to send me for a bone density test based on my dietary response. She also tested me for all kinds of dietary deficiencies for the same reason.

And yes, you might be denied life insurance with an official celiac disease diagnosis as well as private health insurance.

Seeing that you have a child and a niece with celiac disease, and have all the symptoms, it is quite likely that celiac disease is your problem as well. Plus, you really know already that gluten is bothering you, and would do well to stop eating it altogether. Before Christmas, as eating all that gluteny food over Christmas might really make you ill.

[Guest nini]

positive dietary response is the most valid diagnostic tool... soon enough the medical community will have to recognize this. the tests can only confirm celiac/gluten intolerance, they can't ever rule it out. if you feel better off gluten, stay off gluten.