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Cannot Seem to Get Answers About My Diagnosis

Zerosan

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Zerosan Newbie
Zerosan
Posted

Hey all, long time lurker but first time poster. Last year, around August, I had a Biopsy after years of Symptoms. I was told after the test that nothing was wrong, the day after my doctor called and said that it was Celiac. Looking at my medical records show that one of their documents says negative but some of the biopsy paperwork shows positive. So I went gluten-free but my symptoms continued. Constant Nausea, abdominal pain and weight loss. This continued and I was prescribed with a Nausea medication to assist with handling that, it was suggested I get a second look at what is going on. So I go to Mayo Clinic, there I get a second endoscopy and it comes up negative. One of my doctors believes it could be due to my gluten-free diet, the other does not believe I have Celiac. I have done a CT Scan with Dye, eating the radioactive food test and now they want me to do a pill biopsy due to some swelling in my small intestine.  I have kind of been at my wits end and tired of feeling this way everyday even though I have changed my diet and such. Any suggestions? They still are unsure why I am feeling this way or how to properly treat me. My story has a tad more to it but those are the big plot points in my life at the moment. Any thoughts on the matter? I appreciate anyone taking the time to read this even, I don't know who else to talk to about this or how I can control these symptoms. 

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cyclinglady Grand Master
cyclinglady
Posted

Were any of the celiac blood tests given at any point in time?  

Zerosan Newbie
Zerosan
Posted
  • Author

I did receive multiple blood tests, all showed as negative. They did some months before the original biopsy, right before / after first biopsy and before the second one as well.

cyclinglady Grand Master
cyclinglady
Posted

So, negative blood tests, yet the first endoscopy/biopsies revealed damage (wonder how much?).  Were other things that cause villi damage ruled out?  Here is a list:

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cyclinglady Grand Master
cyclinglady
Posted

Oh, has your gallbladder been checked for funtionality?  This can cause severe pain, nausea, etc.  An ultrasound or CT scan will not catch gallbladder functionality.  I should know, my BG worked on and off for years until it start to rot.  No stones - just would not empty (randomly).  

cyclinglady Grand Master
cyclinglady
Posted

Okay, the forum edit function is not working today in my iPad.  I meant, GB (gallbladder) not BG!  ?

Zerosan Newbie
Zerosan
Posted
  • Author

My Gallbladder was tested and appeared to be operating normally, that was their first though on the pain. As for the damage, it was described as not that much, I do have a slight intolerance to Milk. Could that have caused the damage? They thought it might be Crohns which is causing the swelling but they said its minimal but still noticeable.  If I had Celiacs do you think when they tested again with a biopsy it would show?

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Zerosan Newbie
Zerosan
Posted
  • Author

They did some kind of blood test or something for Crohns early on and it tested negative i believe, I see what you mean. Edit function didnt work too well on Galaxy tab either =).

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    • Mari
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      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
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