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Diagnoising Yourself

Danhunter

By Danhunter
in Doctors

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Danhunter Newbie
Danhunter
Posted

Well I finally managed to get some comfort in the fact that I am NOT ALONE in my frustrations with my doctor. I was thoroughly read threw all the post in relation to the question, and found many people needing confirmation of the disease which they themselves know to be true. Many say they go back onto wheat, barley and Rye and experience horrible symptoms much worse than before as their bodies are fighting off the toxic invasion much quicker, many cannot bare doing it more than a week and ask the doctor to take a blood sample as quickly as possible.

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kittty Contributor
kittty
Posted

Definitely get a new doctor. I am self-diagnosed and went gluten free, but followed up with a doctor after a few months. She was very understanding, and recommended the blood test even though we knew it would probably come back negative. She didn't know much about celiac at first but she RESEARCHED for me, and even called a GE to talk about the blood test results and ask how quickly the antibodies disappear after going gluten free. She said it was pointless to go back on gluten just to get a diagnosis when we can observe through diet what the problem is. She diagnosed me as "celiac presumptive" and that was good enough for me.

After ranting about doctors for ages myself, I'm actually pleased that my doctor has supported me through this. She wasn't able to put a finger on the problem herself, but she sure did listen to me when I came to her with a suspicion of celiac. And she was EXCITED for me, because she knew that I'd been dealing with a variety of different problems for many years.

You say that you're still having problems, but they have gotten any better. Some people take much much longer to heal, so you're on the path to recovery but aren't there yet. Make sure you're eating good food, and not just high calories to gain weight. You probably need to play catch-up with your vitamins and minerals.

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. If you are already gluten free or gluten light testing for celiac will be a false negative. What are you typically eating? Going with whole unprocessed foods is the best for us at first. Are you eating many gluten free replacement foods? We can have problems with some of those especially if they contain Codex Wheat Starch (some consider it to be gluten free but many of us will react to it) Soy and dairy are also common for us to have problems with so you may want to avoid those for now.

Has your doctor tested your levels for vitamins and minerals? It can take some time for us to heal and be able to absorb nutrients properly so do have the doctor check. If for some reason the doctor won't then do supplement especially with the B vitamins. Don't oversupplement with iron unless you know you need to as too much can be toxic.

Do read the Celiac 101 thread as it has a lot of useful information. We have to be careful not only about what we eat but also how it is prepared.

I hope you feeling better soon but it does take time.

intolerant baker Newbie
intolerant baker
Posted

Welcome to the board. If you are already gluten free or gluten light testing for celiac will be a false negative. What are you typically eating? Going with whole unprocessed foods is the best for us at first. Are you eating many gluten free replacement foods? We can have problems with some of those especially if they contain Codex Wheat Starch (some consider it to be gluten free but many of us will react to it) Soy and dairy are also common for us to have problems with so you may want to avoid those for now.

Has your doctor tested your levels for vitamins and minerals? It can take some time for us to heal and be able to absorb nutrients properly so do have the doctor check. If for some reason the doctor won't then do supplement especially with the B vitamins. Don't oversupplement with iron unless you know you need to as too much can be toxic.

Do read the Celiac 101 thread as it has a lot of useful information. We have to be careful not only about what we eat but also how it is prepared.

I hope you feeling better soon but it does take time.

I went gluten free before my testing (thinking I had systemic candida for years) so I also had a negative blood result. All my other labs and the past six years of "unrelated" health issues has my doctor also recommending a gluten free lifestyle. My question is whether I should ask for a referral to a nutritionist or RD? I have had B12 anemia and Vit D deficiency for at least two years. I am having difficulty digesting still despite probiotics and digestive enzymes. I have not seen a gastro, my primary has really been incredible and I know she does not think I am crazy or a hypochondriac. Do most folks with the malabsorption issues go to a nutritionist?

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      If you were off gluten for two months that would have been long enough to invalidate the celiac blood antibody testing. Many people make the same mistake. They experiment with the gluten free diet before seeking formal testing. Once you remove gluten from the diet the antibodies stop being produced and those that are already in circulation begin to be removed and often drop below detectable levels. To pursue valid testing for celiac disease you would need to resume gluten consumption equivalent to the amount found in 4-6 slices of wheat bread daily for at least two weeks, preferably longer. These are the most recent guidelines for the "gluten challenge". Without formal testing there is no way to distinguish between celiac disease and gluten sensitivity since their symptoms overlap. However, celiac disease is an autoimmune disorder that damages the small bowel lining, not true of gluten sensitivity. There is no test available for gluten sensitivity so celiac disease must first be ruled out. By the way, elevated liver enzymes was what led to my celiac diagnosis almost 25 years ago.
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