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Maybe I Am Just Crazy?!?

cblack

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cblack Apprentice
cblack
Posted

I hope someone on this forum can help me. I just got the results back from small bowel biopsy and blood work yesterday. GI reports that both were negative and he doesn't believe I have celiac. I'm beyond frustrated at this point. For 13 years, I have had a dull ache in left side of stomach, intermittent diarrhea/constipation, gas, bloating, chronic fatigue, tingling/numbness in hands and feet, and acid reflux. I have a history of canker sores and anemia. My immediate first degree relative history is Type I diabetes (sister), seizures (mother & brother), and mother died of stomach cancer. After numerous doctors and tests over the last 13 years, nothing has ever been diagnosed, other than depression and stress. I have been rx'd anti-depressants and sleeping pills more times than I can count. And treated like it's all in my head more times than I can count as well. I finally gave up and decided that I was just going to have to live with this not feeling well. Three months ago during routine blood work by my gynecologist, my liver enzyme panel came back elevated. In researching possible causes, I came across celiac disease and as the saying goes, "the light bulb came on". I felt like I had finally found the cause for all my vague symptoms. Finding a doctor to test for it became a lesson in futility. I took the Prometheus test and tested positive for the DQ2 and DQ8 genes. I also did the Enterolab test and tested positive for IgA. A week ago, after much frustration, I finally found a GI that did the endoscopy and blood work based off of those tests. Yesterday, he told me that I was not celiac, that yes, I do have the genes, but "so does 30-40% of the population" and that "doesn't mean anything". He didn't have an explanation as to why I am having these symptoms, just said that I definitely don't have celiac disease. As far as the Enterolab test, he says fecal testing just isn't done, and he's not comfortable with it. He did say that I was deficient in Vitamin D and should start a supplement. He ended the conversation with, "thank you and it was nice meeting you". Immediately after the endoscopy, I went gluten free and do feel better. The bloating, gas, and acid reflux is diminishing. The dull stomach ache is still there intermittently, but seems to be improving. My stools still aren't what I would call normal, but better than they were. But I've only been gluten free for 5 days. I apologize for the length of this message, I'm just still feeling so confused and really thought I had found the answer. Can someone explain the difference between celiac disease and gluten intolerant? Am I gluten intolerant? Is it one in the same? I just don't know what to think!

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AlysounRI Contributor
AlysounRI
Posted

Hiya:

I am in a bit of the same boat as you, and no, you are not crazy.

I am still trying to find out my blood test result levels but my biopsy seems normal.

Here is how I see it.

You can be gluten intolerant and not have celiac disease.

If you are celiac disease, have an extreme form of gluten intolerance.

But you don't have to have celiac disease to be gluten intolerant.

Like you, after years of IBS, problems with anemia, lactose intolerance, and general malaise, I had some blood tests and my liver levels came back elevated. I started reading about celiac disease. A naturapath about 7 years ago had suggested that I give up wheat because of my IBS and because wheat is a very inflammatory thing for some people (you and I most definitely!).

I did give up wheat but I fell off the wagon. I felt okay but I was still eating lots of ryevita and still having IBS attacks, achy all over, dull headaches, not as much energy, etc. Fast forward to 7 years and I am miserable beyond belief again and thinking I need to give up wheat again but this time I will take it a step further and I would give up all gluten and oats and see that happened.

Success. My three week experiment started to work wonders. I had never felt so incredibly good in my whole life!!

So I decided to be tested, went back onto the poison in order to be tested. I was miserable and everyone remarked on how tired I looked and the dark circles under my eyes. I was tested and, at least, the biopsy came up negative.

For some people, gluten, wheat being the main offender in the western world(!!) is just toxic to our systems. Then again there are lots of false negatives in testing, and the six samples they take in the endoscopy are from 30 feet of small intestine and your damage may be patchy. It doesn't seem to be an exact science.

My lesson in this little ODDyssey is this: if you tested negative for celiac, don't worry. If you feel better going gluten-free (and I know I do!!), then keep to it. YOU know YOUR body best. Gluten is just toxic to some people, even if you don't have celiac, that is very important to remember.

If you want a mind blowing book to show you just how toxic find a copy of Healthier without wheat: A New Understanding of Wheat Allergies, Celiac Disease, and Non-Celiac Gluten Intolerance / by Spephen Wangen, 2009. It covers not only celiac but gluten intolerance.

If you want to send me a message, and ask more questions, feel free to do this. But I do know what you are going through with your seemingly negative result. It's a confusing experience, I know, I really do know.

Just take a deep breath, and stay on the gluten-free diet as best as you can. You will continue to feel better. And take that vit. D!! That is incredibly important.

But if you want to send me a message of list, please do so, okay.

Hugs,

~Allison

Terrified Mom Newbie
Terrified Mom
Posted

I'm new to this whole celiac thing, so can't really offer any advice there, but as for Vit D, the best way to get your levels up is good ole sunshine. Without sunscreen. With digestive issues taking a supplement isn't going to help a whole lot, and it is possible to overdose on D, but your skin will never make too much. You can make Vit D in a tanning bed as well. The sun is not the big cancer causing evil sphere it's been made out to be in recent decades. Skin cancer rates have actually gone UP since it was demonized! Decades ago skin cancer was known as "the secretary's disease" because it was people who were locked inside all day that got it, not those who were outside in the sunshine! Just thought I'd share that in case the sun worried you. :D

RollingAlong Explorer
RollingAlong
Posted

My spouse's experiences were similar. Sister with ulcerative colitis, cancer in the family tree, all his blood tests and biopsy negative.

He GI said "eat what you tolerate." 3 little words. no diagnosis. Positive response to a gluten-free diet.

Statistically, it is possible that you are reacting to casein and soy as well. Be on the lookout for additional food intolerances.

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