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coastalstorm25

Not Tested Positive For Celiac..but I Have Many Symptoms

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I had blood work done last week to confirm Celiacs. It came back negative, I guess that's good right? Since Celiacs is extreme ...very sorry for those who are :( . One thing that lead me to get the blood test was that I had heard of a lady who eliminated gluten from her diet and her migraines went away. I have had migraines sine the birth of my child 13 yrs ago...before that I had gotten eczema, yeast infections, and I had anemia and anorexia and Pica at one point...when I ate too much wheat. Now after the birth of my daughter and son..inaddition to the other list... I also have tingling sometimes in my hands and feet, I am COLD all the time!!... allergies from canola, cottonwood, citrus, fatigue and I also have keritin pilaris on my face and perioral dermitis some times. It just seems the list goes on. I am trying the gluten free diet...its not too bad since I stayed away from alot of wheat because of the eczema ...but when I ask my docotr for the other numbers from my results what am I looking for? I am going to stay on this diet for at least 2 months and see if the migraines go away.

Your thoughts and suggestions?

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Blood tests are not always 100% so you may consider a biopsy. However, if you do this do not go off gluten. You must have it in your system to have a accurate result. You blood test could be low and/or show a false negative if you were previously avoiding some forms of wheat because of the eczema. I tested negative but consider myself gluten intolerant because going off of it I feel fantastic and all my symptoms have gone away including explainable migraines and hard to get rid of yeast infections.

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I had horrible daily migraines for years. When I went gluten free they went away except for menstrual migraine which actually got worse. This is consistent with what I have read in that the hormones start working again and the menstrual migraine can become worse but the daily migraines have all gone completely away with total elimination of wheat. Be careful of cross contamination if you are going to go gluten free without testing. Even traces of gluten cause migraine to return for me. You may be pleasantly surprised that your skin gets better too. All sorts of rashes respond to being gluten free and people are always posting how much better their skin is since they have gone gluten free. I have DH (Dermatitis Herpetiformis) the skin form of Celiac on my face. It took a year to go completely away but I now have clear skin. Some Dr.'s called it Peri-oral Dermatitis, but it was actually from gluten and was DH. So be suspicious of that and if it is from gluten you will have to be very careful of cross contamination. The fact that you tested negative doesn't really mean you don't have Celiac. It means you tested negative...but there are a lot of false negatives. Like 20 to 30%. So if you truly suspect gluten and Celiac, be vigilant about avoidance so you can be sure of reactions. One last thing....the fact that you say you are always COLD!! That is a symptom of hypothyroid, Hashimoto's, which is very common in women with Celiac. I call Hashimoto's the brother of Celiac because so many of us have both. I wear wool socks year round. Anyway, you might get your thyroid checked with a specific request for Hashimoto's and then also you could ask for your vitamin levels to be checked as another way to see if you are degicient in the vitamins that Celiacs are commonly deficient in. I got diagnosed backwards in that the Dr. saw my sores healing that we had been treating for 3 years as fungus, acne, bacterial infection, or virus with no results. Also my vitamin levels were low and now are normal. I tested postive for Hashimoto's and had a hugely postive reaction to the gluten free diet which has eliminated chronic bladder infections, and chronic migraine. Soooo I got the diagnosis based on everything that got better when I went off gluten. Anyway, it doesn't really matter to me about the diagnosis as long as I know what the problem is...gluten. good luck and I hope this works as well for you as it did for me!

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All of my bloodwork was normal - bloodwork is NOT a conclusive test for Celiac. You can't rule it out until you have an endoscopy...

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And sadly, the accuracy of the biopsy is questionable depending on the skill of the doctor, how many samples he takes and if they are from the right areas, and the skill of the pathologist in reading the slides. Sometimes the damage in your small intestine is not sufficiently advanced for them to consider it a positive diagnosis.

There now, aren't we a bunch of little joy germs??? :lol:

Unfortunately, this scenario is all too real. You are negative on bloods and negative on biopsy, but you still don't know FOR SURE that you are not celiac. But the bottom line is that if gluten is a problem for you it doesn't really matter a lot unless you are going through the school system and need a positive diagnosis to get the school to make accomodations for you under the ADA.

Actually, celiac disease is not much more extreme than gluten intolerance :ph34r: Many of the symptoms are the same, many of the risks are the same, and the treatment is the same. So ultimately, despite what the doctors say, it doesn't really make that much difference in your life. If you have children, you must make sure they are tested at regular intervals and pay attention to any symptoms that could possibly be ascribed to gluten, but apart from that, welcome to the gluten free club.

By the way, What do you ask your doctor? You ask him for a copy of the report, and if you would be good enough to post the results here with the ranges the lab uses, there are many posters on this forum with a scientic testing background who would be happy to give you an interpretation of them which may well be more accurate than what your doctor gave you :P

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