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Derek Borckmann

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After three months of being on a gluten free diet I called my doctor and told him I was felling worse. He ran some blood tests and called back indicating that me having Celiac Disease was not likely as all the allergy tests that were run came up negative. Other tests that indicated Celiac as well as some other organ testing that he said would indicate Celiac was not present. He indicated that part of the biopsy indicated that I did not have the jean that causes this and the limited stunting of the hairs I have was caused by something else.

Three months ago he indicated that I likely had Celiac and needed to go gluten free and now this.

Have others encountered this as some of the stories I have read have been similar.

I am going to remain gluten free to see if the symptoms change but wanted some opinions.

Derek

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Hi Derek. After three months gluten-free your blood tests would not show celiac, so I am puzzled your doctor did that and then said you did not have it. It sounds to me like you have a doctor that isn't all that informed about celiac.

About getting worse, there are several people here who have talked about that. Hopefully others will respond.

I am gluten-free not quite as long as you so can't give you a longer term perspective. But I have been worse overall rather than better since going gluten-free. I am still trying to figure this out too. It is obvious to me that going Gluten-free Casein-free has triggered a major upheaval in my body. So I think if I was not gluten sensitive/celiac, that would not have happened.

My thoughts are possibly other food sensitivities, lyme disease, retracing of symptoms, vitamin mineral/and or malnourishment symptoms. Or exposure to gluten in some form that you don't realize such as cc or a change in ingredients of something that used to be safe. Celiac is also associated with other auto-immune disease--so something not yet tested for or for which your symptoms are atypical?


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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One thing I can say for sure is that it takes many people who ARE gluten intolerant a few months, perhaps even a year, before they feel significantly better on the gluten-free diet. :( This is something I've read over and over here in this forum. So even though you have not yet physically responded to the gluten-free diet, you may still have an intolerance. So often a person quits this challenging diet after not giving it enough time. "I still feel miserable, and I've been doing this all summer! It can't be gluten!" A common lament from an understandably frustrated person who yet still may be gluten intolerant.


Emily

diagnosed type one diabetic 1973

diagnosed celiac winter 2005

diagnosed hypothyroid spring 2006

But healthy and happy! 253.gif

11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.

--Pierre Joseph Proudhon (1809-1865)

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One thing I can say for sure is that it takes many people who ARE gluten intolerant a few months, perhaps even a year, before they feel significantly better on the gluten-free diet. :( This is something I've read over and over here in this forum. So even though you have not yet physically responded to the gluten-free diet, you may still have an intolerance. So often a person quits this challenging diet after not giving it enough time. "I still feel miserable, and I've been doing this all summer! It can't be gluten!" A common lament from an understandably frustrated person who yet still may be gluten intolerant.


Emily

diagnosed type one diabetic 1973

diagnosed celiac winter 2005

diagnosed hypothyroid spring 2006

But healthy and happy! 253.gif

11 year-old Son had negative blood panel, but went on gluten-free diet of his own volition to see if his concentration would improve, his temper abate, and his energy level would increase. Miraculous response!

The great are great only because we are on our knees.

--Pierre Joseph Proudhon (1809-1865)

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Sounds like an uninformed doctor to me. On a gluten free diet your stomach can heal within that time period and show up normal.

I'd also check other possible sources of gluten, changes in your diet, new meds, something that was safe that isn't any longer, or cross contamination. Also possible that something your having more of now on the gluten free diet is a problem. Someone on here was saying they found out they couldn't handle corn and that is in nearly everything that is gluten free.

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Guest Doll
After three months of being on a gluten free diet I called my doctor and told him I was felling worse. He ran some blood tests and called back indicating that me having Celiac Disease was not likely as all the allergy tests that were run came up negative. Other tests that indicated Celiac as well as some other organ testing that he said would indicate Celiac was not present. He indicated that part of the biopsy indicated that I did not have the jean that causes this and the limited stunting of the hairs I have was caused by something else.

Three months ago he indicated that I likely had Celiac and needed to go gluten free and now this.

Have others encountered this as some of the stories I have read have been similar.

I am going to remain gluten free to see if the symptoms change but wanted some opinions.

Derek

In addition to what has been said, it is fine to stay on the diet, but make sure you follow up with your doctor in case it ISN'T Celiac. I assume he tested your liver and kidney function in addition to basic bloodwork? Can you tell me what your symptoms are?

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I have double DQ1 genes. That is commonly referred to as Gluten Intolerance. Gluten Intolerance is as bad or worse than "Celiac". Gluten Intolerance also comes with neurological issues etc.

When you are tested for the genes at your doctors office they only test for DQ2 & DQ8. You can also have total villi atrophy & not have these two genes. 1% of the biobsy dx'd people do not have DQ2 or DQ8. They do know there is at least one celiac gene that is not known, in addition to the DQ1 & DQ3 gluten intolerance genes & maybe DQ7 - I am not sure on that one.

IMO the blood tests are almost useless. I would suggest testing thru Enterolab.

Now as to why you might be feeling worse.

These are all guesses put out here for your consideration.

1.

Your gut absorption might be getting better & triggering a reaction to any of the following, OR you might be feeling better from the no gluten but now any other food issues you had before are becoming noticeable OR you have just developed a new (temporary?) food intolerance.

Dairy

Soy

Corn

Eggs

Nighshade Family - peppers, tomatoes, potatoes, eggplant, etc etc

Yeast

Artificial Sweetner

Coffee

Tea

Sodas

2. You are eating bought gluten-free bread, cookies, crackers etc. ALL that stuff has some level of cross contamination in the grains. There are a couple of the celiac doctors that advise that all gluten-free grains are cross contaminated. Which I also believe. I just cannot handle any of it. It is my opinion that you can eat a great delicious diet without those products. I do. I eat Lundberg Rice Chips, Mission Brand White Corn Tortillas as special treats - not every day. I eat my spaghetti sauce etc over Rice.

3. If your house is not gluten-free you are getting cross contamination there. After a time gluten-free you become more sensitive to it. So if someone in your house is eating wheaty sandwiches or cooking with flour (airborne gluten equals a given you are going to have symptoms). Did you replace your cutting boards, plastic spatulas, wooden spoons, colanders, non stick pans, clean out the kitchen - really well?

I suggest you pare back to some basic whole foods & go from there. I also highly recommend the book "Eat Right for Your Blood Type", & Dangerous Grains.

You could also check into the SCD (Specific Carbohydrate Diet) books & articles.

Are you taking a B12 everyday?

Are you getting enough good carbs? protein? You could do a check of all the vitamins & minerals etc. that you are getting in your diet.

Are you exercising? That really boosts your immune system - I think especially for us...

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