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No Official Diag


Trying to live G free

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Trying to live G free Newbie

I have no official diagnosis from any Doctors. My symptoms have been going on for 10 years plus. I stumbled upon Gluten intolerance about 5 years ago and started trying to eliminate Gluten. I also struggle with lactose, chronic fatigue, fibromyalgia. Although I try to stay away from Gluten I don't always succeed. I still battle with intestinal gas that is embarrasing, and very itchy back and back of the head. If I manage to control the Gluten free diet I do notice a difference. I also feel very sensitve to touch, like my skin sometimes hurts if patted or rubbed. The symptoms stay with me several days if I have Gluten for one day.... Doctors acted like they did not know what I was talking about and even did not know what test to do when I asked about testing for Gluten intolerance. Some made me feel like I was a hypocondriac...But I know my body and do not give up trying to find and even balance. I do take digestive enzymes and probiotics, always looking to make sure no lactose or Gluten. Does any one else find it diffucult to stay completely away from Gluten? Can anyone recommend a Doctor in Orange County, Ca?


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mushroom Proficient

Hi, and welcome to the forum.

This may sound a little simplistic, and is not meant to be condescending, but the rule for staying gluten free is to not put something in your mouth unless you KNOW what it has in it. If you don't know, don't eat it. And of course, you also have to learn where gluten lurks and where to look for it. You have to decline food made by well-meaning friends who do not know about cross-contamination and, in some cases, even what gluten is. You have to be extremely careful in restaurants and make sure your server knows what gluten is, and that he communicates to the chef your gluten free needs.

And, of course, you have to ruthlessly go through your pantry and donate all your food items that contain gluten to a worthy cause (which is not your stomach) :P

Do the same for lactose - none comes into the house. I used to make my guests bring their own milk and take it home for a while until I learned to keep a box of milk in the pantry and then I would send that home with them when they left. No cheating on ice cream :ph34r:

Itching could be a sign that you need to get rid of soy or another food that may be an additional intolerance. But you won't know that until you completely get rid of the gluten and lactos. :)

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    • Julie 911
      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
    • Julie 911
      Good day! New members here and I have a question about medication. My gastroenterologist made me stop some medication during the gluten challenge beforenthe screening test but I have a little surgery tomorrow and I need to know if I can use tylenol for half a day or if it will give me false results using it.   Thanks 
    • Scott Adams
      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
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