Celiac - Other Than Wheat Or Gluten

[Lisa]

Member to join the club with positive biops. I have been talking to some of you through e-mail and hopefully graduating to the message board. Gratefull for some wonderful advise. I have had digestive issues most of my 50yrs. ug. and suddenly three months ago celiac disease kicked in and it has been difficult to leave to house with most of my stomach acid and all of my lunch taking the quick route. I have been trying to be gluten-free for two weeks and symptoms seen to be subsiding. Blouting and coronic lower back soarness have continued and am assumming continued inflamation, with mouth dryness. Does any of this sound consistant with celiac disease?

Question: Once celiac disease has settled in can the symptoms continue with any other substance if totally gluten free? (In otherwords, could glutens not be the issue, and what else could) Don't want to sound like I am in denial, but it seems to strange to me that a heavy bout with stress can cause a disease like Celiac (that part makes sense) and then for the rest of my like I have to filter out glutens.

Can or attempting to eliminate stress heal those little villi? - therefore eliminating glutens as the intolerants.

Thanks for all the info. that I have read and you all are unbelievable informed. Trying and learning fast. (If I get this on the board - thanks Kaiti) --Lisa

[KaitiUSA]

Question:  Once celiac disease has settled in can the symptoms continue with any other substance if totally gluten free?  (In otherwords, could glutens not be the issue, and what else could)  Don't want to sound like I am in denial, but it seems to strange to me that a heavy bout with stress can cause a disease like Celiac (that part makes sense) and then for the rest of my like I have to filter out glutens.

Can or attempting to eliminate stress heal those little villi? - therefore eliminating glutens as the intolerants.

Thanks for all the info. that I have read and you all are unbelievable informed.  Trying and learning fast. (If I get this on the board - thanks Kaiti)  --Lisa

<{POST_SNAPBACK}>

No problem Lisa- I am glad I could help

Symptoms of celiac can continue even when gluten free until your body heals the damage that has been done. It takes a while for symptoms to go away. Everyone varies with those times. Took me 8 months to get back to normal but I was feeling alot better and seeing major improvement after the 3rd month.Celiac is caused by gluten-not anything else.

Attempting to eliminate stress would be good for your body because stress suppresses the immune system. However, only being gluten free 100% will heal the villi.

Even if you are 99% gluten free-that 1% you are not gluten free is like not following the diet at all because your villi will not heal even if you eat a small amount.

With a positive biopsy-you do have celiac...I went through a denial stage too. I think everyone goes through the denial stage to an extent. Just read up on celiac and realize it can cause life threatening things if not followed.

[tarnalberry]

Question:  Once celiac disease has settled in can the symptoms continue with any other substance if totally gluten free?  (In otherwords, could glutens not be the issue, and what else could)  Don't want to sound like I am in denial, but it seems to strange to me that a heavy bout with stress can cause a disease like Celiac (that part makes sense) and then for the rest of my like I have to filter out glutens.

Can or attempting to eliminate stress heal those little villi? - therefore eliminating glutens as the intolerants.

<{POST_SNAPBACK}>

If you remain totally gluten-free, yes, other issues can continue to cause problems. You can have any other gastointestinal problem along with celiac disease and you can have other food intolerances (particularly dairy) that can cause similar problems. It can be tough to work through them and identify everything, but - as with most things - it just takes time and effort. But if you have celiac disease, you have celiac disease. If your blood tests and biopsies came back positive, then gluten is the problem. Other things could *also* be problems, but gluten is.

The damage that they found in your biopsy is almost always caused exclusively by the autoimmune reaction initially started by the gluten proteins. (Dairy can cause enteropathy as well, but it's much less common than celiac.) The blood tests *specifically* look for an antibody against the wheat protein. So it isn't measuring symptoms, it's measuring to see specifically if your immune system responds to wheat. Eliminating stress will help heal the intestines but nothing is going to change your immune system back to no longer expressing the genes that produce the antibodies to wheat in your system.

[Lisa]

If you remain totally gluten-free, yes, other issues can continue to cause problems.  You can have any other gastointestinal problem along with celiac disease and you can have other food intolerances (particularly dairy) that can cause similar problems.  It can be tough to work through them and identify everything, but - as with most things - it just takes time and effort.  But if you have celiac disease, you have celiac disease.  If your blood tests and biopsies came back positive, then gluten is the problem.  Other things could *also* be problems, but gluten is.

The damage that they found in your biopsy is almost always caused exclusively by the autoimmune reaction initially started by the gluten proteins.  (Dairy can cause enteropathy as well, but it's much less common than celiac.)  The blood tests *specifically* look for an antibody against the wheat protein.  So it isn't measuring symptoms, it's measuring to see specifically if your immune system responds to wheat.  Eliminating stress will help heal the intestines but nothing is going to change your immune system back to no longer expressing the genes that produce the antibodies to wheat in your system.

<{POST_SNAPBACK}>

[Rachel--24]

Eliminating stress will help heal the intestines but nothing is going to change your immune system back to no longer expressing the genes that produce the antibodies to wheat in your system.

<{POST_SNAPBACK}>

Can stress worsen symptoms as well? I was not able to handle stress too well the whole time I was sick...I would get a real bad headache or just get real tired after the smallest amount of stress. Is this normal when still eating gluten?

[Lisa]

Well.....Guess your body tells you what it wants. I never ate bread (glue and water), pasta (same), donunts (smell funny) and beer I can't stand. I have been spending hours in the grocery store reading lables. (my hubby thinks I like the butcher . Definitely have some lower back issues. Is this an inflamation issue? I have lost ten pounds a year, 5'8" - 120lbs with a blouted belly. If I could twist my torso around and belly can be the bottom and vise versa, I's have a pretty good figure. Can't sit for a long time on hard chairs without pillow or my back will cramp up because I am sitting on my tail bone. Not cushion there. Does anyone have issues such as this with celiac disease?

My 21yr old daughter has been waking up with headaches for many months and cramps after eating. She is young and doesn't eat when she should. Should I have her tested?

Lisa

[Merika]

Your daughter should be tested. In fact, all of your immediate family should be tested, as they have a 1 in 10 chance of having celiac disease, even without obvious symptoms. The blood test is simple, accurate, and easier to encourage them to do than a biopsy Just make sure they run the full panel with ttg.

As for your back, well, it's my experience that when the front of me cramps up (stomach, etc) the back of me will too. So it's possible that what you are feeling is in fact originated at your gut area, and when this eventually calms down, so will the pain in your back.

For example, try tensing up one shoulder area and see if your mid/lower back on the opposite side of your body doesn't tense up. It's our bodies way of counterbalancing and keeping us in check. And then there is the well known carpel tunnel syndrome that sufferers feel mostly in the wrist, but which actually originates from malpositioning of the shoulder. So, what I'm trying to say is, it's all connected (most likely).

Hth,

Merika