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Confused About My Diagnosis

Neko2277

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Neko2277 Newbie
Neko2277
Posted

Ok so 2 years ago my doctor tested me for Celiac Disease (blood tests) and called me and said the results were positive for celiac and to go on a gluten free diet. So i did. Three months later I went to a gastro md and he told me that i would need to go back on gluten to have the endoscopy done. I didn't want to because when I ate gluten I felt so horrible. I never got the endoscopy, but felt great gluten free. (2years gluten free) I was satisfied with the positive blood and diet results. Anyway about 6-7 months ago all the symptoms have seemed to return. I am very strict with my diet and KNOW that I am not getting glutened. So I went to a new gastro md who wanted to confirm what I said about celiac and took more blood tests. (I thought you couldn't do that when you were on a gluten free diet.) They insisted that you could. And low and behold the results came back today, negative! They told me, "no you do not have celiac disease. It must be something else."

Help! What should I do now? Do I need to find a more informed doctor?

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aikiducky Apprentice
aikiducky
Posted

If you are gluten free, the blood tests should come back negative. That means that you've done a good job on the diet so congrats on that. The gastro doc is ignorant.

How careful are you about cross contamination and minute amounts of hidden gluten? Many people get more sensitive to gluten when they go gluten free and stop eating it all the time.

Another possibility is that you have another food sensitivity. For example I get almost the same symptoms from dairy as I do from gluten.

Pauliina

Michi8 Contributor
Michi8
Posted

Can you get a copy of your original blood tests to see the original results and compare to the more recent tests? It's likely that the negative results you're getting now are because of being gluten free for so long.

Michelle

Neko2277 Newbie
Neko2277
Posted
  • Author

I got a copy of my old tests all I need to do now is get my new ones. I also called a new doctor who is a celiac specialist. But I think I might also have a lactose issue. Thanks for all your help.

Hells Bells Apprentice
Hells Bells
Posted

I think you need a more informed doctor.

If you are gluten free the results of the blood test will be negative and anyway the blood tests should not be used to exclude celiac disease. You may have another sensitivity or intolerance causing the problem. The other option for you may be the entero lab testing.

Neko2277 Newbie
Neko2277
Posted
  • Author

I am going to have the DNA test done. Just so I know for myself. I might also get checked for other intolerances.

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      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
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