Symptoms But So Far No News?

[whimsygirl]

Hi,

I have had problems with nausea for years, but just ignored it most of the time. I went to the dr. once over the bloating cramping pains once but had no success. Then one year ago the nausea just got worse and worse and diarrhea, weight loss, some foods repulsed me the minute I put them in my mouth and others crept up making me ill later. After losing 40 lbs. my family insisted I go to Dr. Typical blood work up and thyroid levels all came back normal. Then next dr. did Upper endoscopy that looked for ulcer and stopped at opening of small intestine. That came back normal. He also did a typical blood work up and a stool sample, all came back normal. Pap from the gyn. came back normal but he suggested the Gluten allergy because the same happened to bro-in-law. I just started avoiding the foods that make me feel ill they are all gluten foods. I then asked my primary dr. about it one day and she said she could do a blood test for it but that if I had been avoiding gluten it might give a false negative because my body isn't making histamines (?). I am still waiting for those results. What should I do next? Should I go back and have the other Dr. perform the endoscopy and go further to test for celiac disease? Is this blood test she's doing enough? I'm kind of upset the one Dr. was in there and didn't test for it before. Sorry for my book I'm just overwhelmed by all this and yet glad to find that all this yucky feeling has a cause and "cure". I thought for a while there I was just a wimp to dealing with stress and it was kicking my butt.

[cdford]

There are several possibilities here. I know how this scenario works because I had been gluten-free with my young daughter for a while before my own diagnosis. Here is what I found out from my own experience and discussions with my doctors.

I don't know how tightly you have been eliminating gluten, so your test may come back showing some level of concern. In this case, you know what to do...go gluten free for sure and completely.

If you have been pretty strictly gluten-free, your test may be negative or inconclusive. This is especially so if your IGa is very low. Next step is up to you and your doctor. (Mostly you...you have to live with the consequences.) You can do a gluten challenge for several weeks then check again. If misery comes calling, you probably already know what the bloodwork is going to show. Personally, I will never do that again even if they try to make me. It is just not worth it after being gluten-free and seeing how nice life can be away from the bathroom and the misery. This is, however, your life and only you and your doctors can determine what is best for you.

You can have a scope and biopsy done with or without the challenge. Realistically, it isn't going to accomplish much unless you have challenged long enough to cause enough damage for it to show up in one of the spots they actually biopsy (you can have damage that is not caught because they just did not happen to get the correct spot when they cut for the biopsies). One of my doctors actually told me not to bother with allowing the gastro doc to "look at my innards" because I had been gluten free for so long before they decided to do it. He had been watching me for several years and had seen the change in my medical status after going gluten-free due to a positive blood test. He saw no reason to risk further damage with a gluten challenge just to prove the obvious. The gastro doc, however, refused to treat me as a celiac disease patient unless she did a biopsy and it was proven. I then had a choice much like yours to make.

You will have to assess your own situation and feel out the responses of your own doctors. You also have to know your body and have a good sense of what your options are. Ask questions. Do your own research. Listen to what your doctors have to say. By that time, you will probably have discerned what is best for your situation.

[whimsygirl]

Thank you soo much for your reply it was very helpful. It is hard trying to work my way through all of this. I haven't been getting much response or cooperation from ANYONE. My family hasn't had much experience with anyone with a gluten allergy and I don't think they know what to make of it.

[HMC]

I've been going through a bit of the same situation. Symptoms for years and finally a GI doctor tells me "I'm screaming sprue." With the symptoms I was displaying the results IGg and IgA lab work, the doctor encouraged me to go gluten-free and ordered an endoscopy for a biopsy of my small intestine. The biopsy came back negative; however the doctor reiterated time after time that the intestine is so long and she only took a "little snip; therefore this indeed is not "ruling out" celiac disease or gluten intolerance. She is sending me for some more lab work and stool samples, but encourages me to remain gluten-free. I have been gluten-free for about 3-4 weeks and I've been feeling so much better! Best of luck! Stay positive.

Heather

[cdford]

It is so hard for some people to accept that an "allergy" to something like wheat can cause all these problems. No getting support from family and friends seems to be a common problem. Keep your chin up and do what you know you have to do. Don't forget to encourage your family members to get tested since this is after all a genetic problem. That might get their attention!