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I'm So Confused Am I Or Am I Not

marie33

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marie33 Rookie
marie33
Posted

I had a blood test done to see if I was celiac and it was negative! I'm so confused :( I have always had trouble gaining weight all my life. I have always been constipated and had stomach trouble. Major fatigue, Aching body and especially my neck. I have geographic tongue. I have night sweats and hot flashes here and there and cold flashes. Major mood swings. Major irritability. Major bloating and a very uncomfortable stomach after I eat wheat products. My heart races and sometimes I have trouble breathing.....Does anyone know how accurate the blood tests are? I feel like throwing up as well off and on when I eat wheat. I go off of gluten this all goes away. I have severe anxiety and panic attacks and they go down to barely anything...but they say its negative from the blood test so I'm not sure what to think??? Any ideas??? Cereal makes my stomach go crazy as well as any beer and breads......

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

The blood tests have a high false negative rate. If you were gluten free or even gluten lite for a while before you had the blood test done it will make the results inaccurate. The best test now is to stop eating gluten. If your symptoms go away when you stop eating gluten then you have your answer. It sounds like you already figured that out, so listen to your body.

ravenwoodglass Mentor
ravenwoodglass
Posted

There are fairly high rates of false negatives with the blood tests. Were you gluten free or gluten light when the panels were drawn? If you were that could be one reason why but false negatives occur even when folks are eating a full gluten diet.

If you have resolution of your issues gluten free you don't need a doctors permission to be gluten free. There are folks on here that are 'self diagnosed' but if you are going to get any more testing done make sure you stay on gluten until the testing is finished.

Dixiebell Contributor
Dixiebell
Posted

My sons blood tests were negative as were mine. He was having so many problems and with our family history of all sorts of illness we opted to not do the endo. instead we tried the gluten-free diet and it is working. He had severe constipation, many different types of rashes, headaches, very strange looking BM's, trouble breathing(rarely) and whined alot. I am so glad his ped Dr. sent him for celiac test or I never would have known about it.

ToriMartin Apprentice
ToriMartin
Posted

I had a blood test recently which was negative. However, I have known all my life I'm allergic to Wheat Starch & Wheat Gluten. My worst problems have been over the last 12 years & recently got worst. So, I went on nothing but Veggies & Meat for 5 days. Introduced Dairy, Bad IBS the next day. Eat Jerkey not knowing it had some gluten in it, same thing... So, it's my understanding that I dont' have celiac but am Gluten Intolerant. Everything makes sense now. I honestly can care less what a Dr says these days... I'm ashamed that they don't listen or try to help. I don't care what tests show. All I know is what reactions happen when I eat something I shouldn't.

I know how you feel :) Good Luck!

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      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
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