I just wanted to get some feedback. I was recently hospitalized due to reoccuring fevers, chills, headache, and lower back pain. I also had a weird pain in my knees, like my bones hurt. I felt absolutely horrible. I was told I also was experiencing Colitis, which I have never had in my life. After CT of abdomen, multiple blood and urine tests, nothing was conclusive. Now my MD wants to work me up for Celiac's disease. I have read about this on the web. but does anyone out there have any experience with this?
Celiac problems can be sneaky. My husband didn't have the outward manifestations such as those you are experiencing, but we found out he had gluten-intolerace a couple of years ago and a lot of his low-grade problems cleared up by following a strict diet. It seemed impossible to do when he first started it, but he doesn't think anything at all about it now and he feels a LOT better.
Many of the symptoms you're talking about could be due to gluten problems. He also had fatigue that would 'hit,' and if he didn't go to bed immediately he'd feel like he was going to fall down. He also got blotches on his skin that we couldn't figure out - not the outright rashes that most celiac's have to contend with. He had joint problems, but nothing that could be identified as arthritis. Food would sit in his stomach. He never had diarrhea, but instead had constipation to a small degree, and most docs said that it COULDN't come from any food issues.
Make sure the doc does the full workup, and ask to have the genetic testing done to see if you have a propensity for this problem. Many docs will only rely on the blood tests, and IMO they're not that accurate. My husband's gluten problem was finally picked up via fecal antibody testing and genetic testing - and that was about a year after we had already started a gluten-free diet because we needed to find out if it would help. It did, and when we got the final conformation via antibodies/genes. So we did things the other way around, but we had an answer. At that point it really wouldn't have mattered to him because he was slowly starting to get his life and energy back, but it was interesting to see the results of the antibody tests
Gluten (and dairy) can also be linked in some to increasing problems in a form of inflammatory bowel condition called microscopic colitis. So if that's the form of colitis you have, make sure to find out if either/both gluten and dairy are problematic for you.
What gene did your husband test positive for? I have the DQ2 gene, which at least 90% of Celiacs have. However I got the blood antibody test and it appeared normal, so my doctor wanted to scope and get a biopsy (as they have said that is the only way to see for sure); but I don't want to do that again, as I just did it less than a year ago (wish they had biopsied then).
krisinfla, I agree with calglal, get the genetic testing and also after whatever tests you have done, you can go gluten-free (completely, no cheating) for a month or so and see if you feel better. If you do, then the testing shouldn't matter, the blood test and even biopsy are not perfect and show false negatives quite a bit.
Okay, I dug out his results. I'll give you the whole thing. I don't quite agree with your doc on the scope being the 'sure' way of knowing - but make sure that the count the IEL's - intraepithelial lymphocytes - because you could fall within the indeterminate range, and if the doc only asks for dx Celiac, you'll get a no - which won't help you.
In my husband's case, he had been off of gluten for a long while when he had this done. It's one of the reasons I feel the antibody test is so much better than the other tests.
Fecal antigliadin IgA - 73 units (normal less than 10)
Fecal Antitissue Transglutaminase IgA - 40 Units (Normal less than 10 units)
Microscopic fecal fat score - 612 units (normal less than 300 units)
Fecal anti-casein IgA antibody - 60 units (normal less than 10 units)
Molecular analysis - HLA - DQB1*, 0604
Serologic equivalent - HLA - DQ 1,1 (Subtype 5,6)
Notes: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have a copy of a gene that predisposes to gluten sensivity (HLA-DQ1 involving the DQB1*0501)
Analysis of this stool sample indicates you have dietary gluten sensitivity, resulting in an associated autoimmune reaction the the uman enzyme tissue transglutaminase and an increased amount of dietary fat in the stool likely dure to small intestinal malabsorption/damage. You also have antibodies to the main cow's milk protein, casein, and hence, you are immunologically sensitive to these foods.
Thanks for the information. I did not get the Fecal Test as my doc didn't think it is very accurate, and thought the blood antibody test would be more accurate (I don't necessarily agree, but went with it). Did you use Enterolab or a different one, and is this something you guys did (ordered and payed for) yourselves or did your doctor suggest and order the test for you? I don't quite understand your comment on the IEL's, is there a test for that, and what does it mean if you are in the indeterminate range?
Did your husband get a diagnosis from these results from the doctor?
We used enterolab. I think very highly of them. I had questions before and after. When I called, they put me in touch with one of the lab people who explained everything. We ordered and paid for the kit. At that point we were so fed up with the doc and the whole situation I essentially said 'screw it.'
IELs - what is found is the presence of lymphocytes within the tissues of the small intestine. They're usually there in what is considered to be a predetermined number within a certain area of tissue (under the microscope field). Let's say that there should be 20/whatever area, okay? And that's in a normal person (no diseases, etc.). A pathologist will stain the tissue and go in to count the IELs in several different sections along the surface of the tissue. (They're not only looking for flattened villi, or distorted surface features which are the more typical that is seen and is characteristic of celiac. And when something is wrong, because the IELs are 'defenders of the tissue,' the IELs will move from deeper in the tissue toward the surface to provide a 'front line defense.')
If the lab has set the standard for celiac at 40/whatever area, what happens if the count is 30/whatever area? The sample is considered negative.
I asked a pathologist why they wouldn't say something on the form that goes back to the doc, something like 'with a count of 30, followup may be necessary and should be correlated with other findings.' I was told that, basically, there's a problem in trying to 'tell/suggest' what another doc should do. So it's not done. If the doc asks for a dx Celiac, if the count is 30, the sample is negative. Period.
When we went back to our doc - who is a friend - we showed him both the enterolab results and he saw the difference himself in how much better my husband was feeling. Our doc didn't really believe it, but accepted it. We never asked for a formal diagnosis from him. We had our answer and knew what to do, that was what mattered.
I don't know why docs balk at using the fecal antibody test - that makes no sense to me. The theory for the use of this type of test is based on very solid fact. I do NOT get it. There are too many individuals - to my mind - who are walking around WITH gluten problems who have been told by their docs that the DON'T have problems because the biopsy was incorrect. And many, many more who had only the blood test and they're needlessly suffering. Taking gluten out of a diet isn't fun and it isn't easy at first - granted. But when you start to feel better and get your life back, it seems likes it's a very small price to pay for happy, 'feeling good' days.
Agreed, I think it is way underdiagnosed and definitely not even considered as much as it should be. For one there is no money for doctors/pharmaceuticals with Celiacs; just plain ole diet/lifestyle change. It really upsets me that this is something that I had to research and suggest and then ultimately tell them I wanted to get tested. I don't know if I even need any more testing; the gene and feeling better on gluten-free is enough for me. I have done gluten free once and felt much better, but started eating it again in order to get tested, so if I do gluten free again and feel better that's all I need.
Thanks again for the information.
my little one is 8 she has celiac for about 4yrs that know of she was very very sick as a baby we would go to the doctors all the time but somthing new is going on with her she gets very high fevers in the last 6months i need some help thank you
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