I Think I Might Have Celiac Disease...

[azuroo]

I think I might have Celiac Disease. My entire life I have had pain in my abdomen, just a couple inches below my belly button. I also have been severely constipated since I was a baby, and I have a rash on my legs that has always been there. The doctor said it was eczema, but no amount of lotions or creams helps it. There have been periods where everything nearly goes away for awhile, like during my teens, but since I had my daughter nearly two years ago it has been increasingly worse until now I am at the point of being in constant discomfort. I am anemic, I can't gain weight (I only weight 100 pounds and I'm 5 foot 7 inches) and I am starving all the time despite eating constantly. I also am fatigued and feel fuzzy in my head on a lot of days, though sometimes I'm not sure if that's not from being the parent of a busy toddler! I also suffer from anxiety, but it mainly centers around my constant stomach pain and being terrified of what it will do next. It can go from constipation and pain worse than childbirth to horrible diarrhea with no warning.

A few years ago I went to the doctor during a bad spell of it, and he said it was IBS. No one mentioned Celiac Disease to me or any possible tests. My father is allergic to wheat according to a skin test, and he has many of the same symptoms I do including the rash and intestinal issues. He took a blood test for Celiac Disease and it came back negative. Does that mean he doesn't have it for sure? My grandfather also has the same symptoms and took the blood test, and he said only part of it came back positive and that meant he doesn't have it...?

Two days ago I decided to stop eating anything containing gluten to see if it helps at all. I figured I really don't have much to lose at this point, and I don't exactly have time and money to waste at the doctor when it seems as if they won't be very clear with the diagnosis anyway. Yesterday I felt amazing. Not one pain in my stomach for the entire day, and I was full of energy. That's the first time I can ever remember not having abdominal pain in a long, long time. Today though, it's back and I don't know why. I haven't eaten anything containing gluten.

How long does it take for gluten to get out of your system? Do you think I feel bad today because there's still half a loaf of bread in there from a few days ago working it's way out? Do you have any tips for me? I think my biggest fear is that being gluten-free won't help and that I'll be stuck suffering like this forever. I really just want my life back...

[RiceGuy]

Yes, it does sound like you at least have a wheat intolerance, if not Celiac. Same for the relatives you've mentioned. Blood tests, biopsies, and all other tests doctors currently rely on simply aren't very reliable. The diet is the best test, and it seems your initial response is very promising.

Since Celiac often leaves the intestines unable to digest lactose until some healing has taken place, it is often recommended to avoid dairy for awhile too, and keep a food journal so you can track how you feel in relation to what you've eaten. That will help nail other intolerances. So if you've eaten dairy since trying gluten-free, that might explain the return of discomfort.

I do think you've found your answer - congratulations!

Welcome to the board!

[Worriedtodeath]

You may also have discovered the ugly monster CC - cross contamination. IF you were a baker or used flour, you may have transfered flour to other food stock like spices or salt or such stuff. Plus, toasters, spoon, pans, pots etc could have traces of gluten hiding in them. I had to restock most of my spices especially the ones I used during pie season like Christmas. YOur can open may have stuff stuck to the blade that opens it. Gluten is sticky sticky sticky. If you can't clean it well or get into all the crevices, then it might make you feel yucky. You may find yourself throwing out pans and replacing them with new ones dedicated to gluten free.

OH iF you have a gluten eater in the house, maybe they made something and didn't clean up well. Sandwhiches are famous for this. My husband still takes a sandwhich to work and I still find crumbs everywhere even after he cleaned off the counter. IT just flies everywhere.

HTH

Stacie

[AliB]

That's what happened to me - within several hours of dropping gluten and dairy the excruciating pain in my stomach every time I ate went away along with the diarrhea. It took a good week for the residual discomfort and bloating to subside and several weeks for my bowels to settle down to a 'proper' function. I too had a short burst of energy, but that abated and it is now a gradual progression.

I realised pretty quickly that I can't cope with carbs very well so have tried to limit my diet to mainly basic foods - meat, fish, poultry, fresh veg and fruit. Initially I couldn't cope with eggs, but now, after 4 months I can.

The fatigue is still an issue although it is not quite as bad as it was (except for right now as I have gone down with a rotten virus!). It was not until 2 weeks ago when I think my immune system started to kick back in and I got a 'proper' gluten reaction, that I realised that I have been low-level 'glutened' pretty much all the way through which is pretty annoying as it will have delayed the healing process.

I thought I was ok with oats (some are) but just didn't think about the possibility of cross-contamination with them from the source, so have dropped them now, too.

I will get CC's every now and again as it is still quite early days and I am still trying to figure out what is safe and what isn't, but I'm getting there.

I am fortunate that my husband has elected to do it with me and he has benefitted from it too - his stomach is much more settled, his Fibromyalgia is generally better and his brain-fog has virtually lifted. When we started the diet I threw everything away that had gluten in it and completely cleaned out my cupboards. I put the toaster away as we don't bother with gluten-free bread (too darn expensive, and we don't miss it anyway now).

I bought a waffle-maker for occasional treats and everything in my pan and cutlery drawers went in the dishwasher several times before use. All the tops were well cleaned and chopping boards were extremely well scrubbed. We are now officially a gluten-free household.

PS. Is your rash itchy? You could have Dermatitis Herpetiformis which usually is a very itchy rash - if so, then you definitely are Celiac.

[azuroo]

My rash goes through phases of being extremely itchy, to just annoying, or sometimes severe burning. It almost looks like tiny pimples, but they are not as bright red and definitely not greasy or pimply! I have super dry skin.

I have been feeling better on and off. My worst symptom is horrible constipation...after I finally am able to go, I have this annoying dull ache across my abdomen just a few inches under my belly button. Nothing will make it go away! When I was eating gluten though, every time I would eat the pain would intensify. Now the ache is just annoying, almost like someone is squeezing or my pants are too tight, or a deep muscle is sore. Is this something anyone else has experienced? I don't know what could cause it, other than damage to my intestines. The doctor is no help, every time I try to explain it they give me laxative and stool softeners (which do not work, just make me feel even worse) and they say it's caused by IBS.

I am trying to be very careful about cross-contamination! This morning I realized that our silverware drawer was full of crumbs...most likely bread crumbs. Cleaned that out right away and put every single piece of silverware into the dishwasher...