Official Diagnosis

[Forty320]

(I like these cute faces)

I posted this message on another thread, but decided perhaps it deserves its own.

I had been gluten-free for about 3 months with miraculous results. I had absolutely no problems with my health at all as long as I was gluten-free. However, my family were pushing me to get an official diagnosis. So I finally made an appointment and went in. My doctor has placed me on a non-gluten-free diet until further notice. I have been in physical distress all this time since. This was only about 5 days ago, but I began to feel the results imediately. I've spent more time in the bathroom these last five days than in all the three months before. It seems like everything I eat makes me sick. I also can't help but imagine how much damage I must be causing my body. I should also point out on a different note that since I'm eating food with gluten in it, food containing gluten seems to have no taste since I've been gluten-free. I even ordered a dominos, which used to be my favourite pizza, and it tasted like glue with a touch of grass. I think I know what I want to hear, but I don't have the emotional strength on my own to defy my family's wishes, and I feel they will respect my condition better with an official diagnosis. I was sent to an allergy specialest also, who discovered I'm allergic to natural vegetation growing everywhere within 800km of my home, and that wasn't what I wanted to hear. It did explain why I have a cold most my life. But I was there to rule out wheat allergy. Am I going about this all wrong?

- Dan

[tarnalberry]

If you know the answer to the question ("Am I gluten-intolerant or not?"), and are having trouble with your family causing you to doubt what you know to be true, then I would suggest working having the confidence to believe in yourself. I know that this probably isn't the answer you wanted to hear, but having people question you on this will happen ... unfortunately, probably the rest of your life. If you think you can stay on gluten for another 85 days (the rest of three months) for the blood tests and biopsies, and you feel that method of diagnosis is best for you, then stick with it - it certainly isn't a "wrong" way to go. But I worry about the tone of your post - it seems that you are saying you can't do what you know to be best for you if your family questions it. They may still question you after the formal testing - and you've already done one formal test, and that's a gluten challenge. Are you prepared to do what is best for you against their advice even after the tests? If the test are inconclusive, or even a negative (though potentially a false negative), will you go back on gluten, even if eating gluten-free makes you feel better?

[Forty320]

I will guarantee you I will go on a gluten-free diet again no matter what the doctor says. I will not live the rest of my life this way. I may have to do it without the support of my family, but I hope not. What I really wish I could do is teach them about this condition. They don't understand why it is so important that I am exposed to no gluten. I have a hard time understanding my own mind. It's hard for me to make decissions when I'm like this. I suppose I should set a limit to how far I'm willing to go before I give up and return to a gluten-free diet. I don't want to put myself in danger by eating something that could be poison to me.

Oh, does it really take three months of eating gluten to get to where I can be tested properly? Yikes! I hope there is a faster way! If I can call what you call a "gluten challenge" a formal test, I think I'll just accept that as such and tell my family I've been formally tested! Then, whether they want to believe me or not is up to them. If they choose to alienate themselves from me, that's their decission, and it's their problem. I won't accept the consequences.

I'm curious, however, if you happen to know, considering the new law that is supposed to go into affect here in the US in january of 06, making it easier to see if wheat is in stuff, if I were not gluten intolerant, and were simply reacting to a wheat allergy, would my symptums be the same? I know they're two different things, but merely avoiding wheat would be easier than avoiding everything with gluten in it. If I had a wheat allergy, would I react the same to wheat as I would react to gluten if I were gluten intolerant? Does that make any sense?

- Dan

[tarnalberry]

I'm glad I just misread your post, and that you'll do what you need to do to keep yourself healthy! I know it can be tough when people don't believe you, but you're right that we're not supposed to feel crappy! :-)

Most allergists will tell you that if you have a wheat allergy (which is an immune response mediated by the IgE molecule), you'd have itchy eyes/nose/face, hives, or other classic "allergy" symptoms caused by histamine release. This is as opposed to an intolerance (which is an immune response mediated by the IgG and IgA molecules), you'd have intestinal discomfort, bloating, and so forth.

But really, the symptoms can overlap more than that. You can get a blood test for an allergy to wheat (IgE) as well as the celiac panel for an intolerance (IgG/IgA), but you can also be both. If you really aren't sure, I'd suggested doing a separate dietary challenge, and after being totally gluten-free for a week or so, eat a big bowl of oats, or a big bowl of pearl barley.

I should be clearer on the "dietary challenge as a formal diagnosis". It's _part_ of a formal diagnosis. Many doctors will not take it as proof - ON ITS OWN. Mine took it for a diagnosis in combination with inconclusive (not negative) blood test results. But, unfortunately, you DO have to be gluten-free for quite a while to have positive test results. You can't diagnos celiac via biopsy without intestinal damage, and there's evidence that you won't get accurate positives on blood work without intestinal damage that allows the antibodies to escape into the blood stream. That's why many good celiac doctors recommend at least three months back on gluten for testing.

Some people around here have used Open Original Shared Link, which is a stool test that has not been peer reviewed yet but was developed by a doctor who deals with celiac. Many of them have found it to be the best way to go for them, and you can be gluten-free for (approximately) up to a year before testing and still get reliable results. Many regular doctors will not accept their findings for a formal diagnosis, however. (Then again, there's arguments about getting insurance and whatnot with that as a formal diagnosis... so there are pluses and minuses...)

[Racheleona]

I have been having the same problem, my IgG number was the only positive and was one point difference from being negative. I have not been getting straight answers, and wonder if only wheat is causing all of my problems ( if that is possible for wheat to cause loss of menstruation, hair loss, graying etc.) A blood allergy test I did, showed no allergy to gluten but allergies to buckwheat, wheat, barley, and I think oats. I'm so confused as to what I should do! So I know how you feel.