Looking For Answers

[stewie]

I have long been suspected of having Crohn's disease or Celiac. A prior negative biopsy I thought had ruled out Celiac, however I have recently been retested for both and am currently awaiting results. My symptoms which include chronic anemia, fit perfectly with both, but I also have a tender lump in my lower right side which never goes away and causes pain when I am having stomach issues. My main question is: is this something commonly seen in Celiac? I don't believe I have ever had any blood work done to rule out Celiac, but considering an earlier biopsy was negative - is there a chance it could have been wrong, and also is there a higher incidence of Celiac in an IBD? My problems don't seem to worsen/improve by what I eat (although there was temporary, shortlived improvement when I tried a gluten-free diet), but rather by hormonal changes through the month. Any opinions to put my mind at rest over the next few weeks would be much appreciated.

[gf-soph]

I'm not sure about the sore lump, but at least you have had some recent testing to help you get some answers. The anaemia is definitely common in celac/gluten sensitivity. You mention that you have had previous biopsies but not bloodwork. There are a lot of posts about the pros and cons of the bloodwork and biopsies, but basically you can have false negatives with both. Also, you can have non-celiac gluten sensitivity, where you have positive bloodwork but a negative biopsy. There are plenty of people (including myself) who fall into that category who get incredibly sick from gluten.

I was suspected of having Crohn's because of long standing anaemia, but nothing was found on biopsy. I think I remember reading that there is some link between IBD and celiac, but I can't give you specifics.

I am interested when you say you had a short-lived improvement from going gluten-free. What sort of improvements? How long were you on the diet? Are you sure that you were completely free of gluten, including being very strict about cross contamination? Even a tiny amount can be enough to keep you sick, and it hides everywhere!!

If you are strongly affected by hormonal changes, have you had your hormone levels looked in to, or have you tried taking the pill to see if it helps? If you get bad period pain and gut pains together, has your doctor considered endometriosis? My understanding is that the tissue can end up adhering to the bowel, causing pain at differnt times of the month. It may be a long shot, but they wouldn't detect that on a colonoscopy as it's a problem occuring outside the bowel.

I hope you get some answers from your testing.