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Jenn2005

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Jenn2005 Contributor
Jenn2005
Posted

I am new to posting on this site but I have been reading and learning here for about a month. My husband has been very ill for several months. He has seen several doctors and the stories that go with those are nightmares I won't take up space with. His symptoms are as follows: Nausea, Diar (that comes & goes), Weight Loss (40 pounds since June), Bloating, Extreme Fatigue, Lack of Concentration, Loss of Strength, Gets Cold Easily. He has had a long line of tests - Blood Work - Full Set 3 times as well as a Full Cardiac Work Up which covers functions of all organs - Blood Work for Deficencies - CT Abd. - 2 Chest X-Rays - Abd. U/S (twice ) - HIDA Scan (gallbladder function test) - Gastric Emptying Test -

Endoscopy - Colonoscopy - Blood Work to check for Celiac Including the tTG (which was all negative) - Stool Test to check for Inflamation Cells & Parasites.

The only thing that has come back on any of the test as abnormal was on the Hida Scan for gallbladder function and he had his gallbaldder removed, the endoscopy said Changes Compatible with Sprue - Negative for H. Pylori, Dysplasia, & Malignancy (but this was missed by the first 4 Dr's that we saw - it was the 5th Dr. that brought it to our attention and called the pathologist and asked him to pull the slides and see if he still agreed with the dx), and the U/S he had last week showed a slightly enlarged spleen. We were told by the new GI doctor that he begin a wheat free diet and that I should go to the library and research on the internet (thanks for all the help doc). I quickly learned that nite that it was much more involved than eliminating wheat. I have implemented all of the suggestions on this site (bathroom items, kitchen items - toaster, utensils, pans, seperate ice container, sponges ect...) we basicly went to a gluten free house over the past 7 weeks to the best of our knowledge. Have seen some impovement but the nausea & bloating are still terrible for him. He was refered to a University Hospital in Gainsville Florida (Shands Hospital) and they first said they thought it was bacterial overgrowth because the bloodwork was negative and that can cause the same apperance on the biopsy as the sprue. They just called today and said they want him to go back on a full gluten diet and they are going to do a repeat endoscopy & colonoscopy on Monday. I have read enough about Celiac to know that if he has been on a gluten free diet for 7 weeks eating gluten for not even 6 days (because of the prep time) will not show anything. Do many people have negative bloodwork and positive biopsy (and is changes compatible with sprue enough of a dx) another note: I just realized that when the dr. called today he said that the tTG was negative (but he had been on a strict gluten free diet for about 5 1/2 weeks at the time this was done - the other test IgA ..... he was not on a gluten free diet at this time & they were negative also). Also is a slightly enlarged spleen a symptom or side affect of celiac? Thank you for any help!

Jennifer

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Carriefaith Enthusiast
Carriefaith
Posted
I have read enough about Celiac to know that if he has been on a gluten free diet for 7 weeks eating gluten for not even 6 days (because of the prep time) will not show anything.
You are right, if your husband is seeking a diagnosis of celiac disease, then he must be eating a lot of gluten for a few months before the tests. Was his previous biopsy done while he was on the gluten free diet?

Your husband could also be intolerant to gluten or another food like dairy, soy, corn, eggs, ect. Casein (the milk protein) can cause a lot of those symptoms as well.

Merika Contributor
Merika
Posted

IF he's celiac, 7 weeks may not be nearly long enough to see improvement. Did he see *some* improvement? I have been gluten-free for almost 2 years now. Nausea was one of my biggest symptoms. It's been better gluten-free, and much better the last 6 months, but for a long time it was still there - a littl edifferent, and a bit less, but still there.

Also, I have found I am allergic to *numerous* other foods, and these can make me feel like cr&p too. Getting rid of some of the allergens has really helped. A blood ELISA test can easily determine most of these for you (don't bother with the skin prick rast tests, imo). google it or search this stie for several labls that run the test - some via doctor, one at home.

Hope he is feeling well sooner rather than later....

Merika

Jenn2005 Contributor
Jenn2005
Posted
  • Author

Thank you for the replies. Yes he did notice some improvement on the diet but as mentioned 7 weeks is not a lot of time, especially considering how long it takes to educate yourself on gluten. Last nite he started the "gluten challenge" and he felt really bad and is still feeling bad today. He said it made him very nauseous and tired, he siad he just felt weird. This challenge (even such a short time into it) has made him realize how much better he was feeling without the gluten - even though he didn't realize it at the time. Thanks again the replies. This site has been like a life saver for us over the past many weeks.

Jennifer

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