Celiac

[kayjay]

Hi... By now most of you know I have H-POTS among other problems, fibromyagia, allergies, migranes. etc

I have had "digestive" issues for years. I assumed that my chronic bloating was from endometriosis... but I had surgery for that. I know I have trouble with dairy so I avoid it.

Do many of you have celiac? I am wondering if it is not IBS. Any insight? Thanks

[sue1234]

I just went through the testing for this in the last few months. I first was found to have a positive(4x high) antibody, but the biopsy was negative. I've had bloating for 10 years, but it has been AWFUL these past few months. There are other members here that have recently been found to have celiac. I wonder if my case might fall under the gluten intolerance category.

For bloating, I saw a g.i. today and he's treating me for small bowel overgrowth. He said right away that it sounds like I have trapped "air/gas" in the small intestine. Then he wanted me to also take probiotics, and I told him I really bloat when I try probiotics(pills, yogurt, etc.). He said it might be a good idea to "clean" my intestines out with OTC stuff first, then take the probiotics so maybe they'll reach the large intestine, and not stop in the small intestine because of all the "backing up". So, that's what I'm doing this week

I really do wonder about the celiac and gluten intolerance and possible relation to POTS.

[juliegee]

My son was tested for celiac as an infant because of severe GI stuff- negative. Bread is actually his "go-to" safe food. Despite negative RAST and biopsy testing for DAIRY, after a careful history, his Hopkins's docs have determined that he has a severe sensitivity and must be non-dairy for life. Whenever he tries some, not only his GI symptoms, but his orthostatic intolerance is awful.

During an allergic reaction, blood vessels leak out, causing hypovolemia & worsened OI. You're on to something. The trigger may be gluten for some, dairy for others, etc. The trick is to identify your trigger and avoid it. Don't rely on skin, blood or biopsies to figure out your triggers. Do stringent elimination diets for at least 3 weeks & monitor symptoms. No easy, but well worth it.

Julie

[iheartcats]

My blood tests came back positive for Celiac (which is a big boo for me because I'm a bread/pasta/baking person).

It's been hard and expensive to try to be Gluten Free but I've managed for 1.5 months.

My weird body aches/pains have decreased about 90%! I also feel less bloated. As for any improvement to POTS? I don't think so yet...but I've been told it can take a long while to start actually healing the insides.

I'd really prefer to have the biopsy to know for SURE. I assume if my body aches have really lessened within two weeks of going GF I should stay GF no matter what the biopsy says. But at least if I know if it's damaging my intestine or not I won't have to be so severely strict with cross-contamination, having a 'bit' of pie, etc.

I'll talk to my Rheumatologist about the biopsy and getting it approved and all that when I see her in a couple of months. She usually feels if you feel a lot better, you can skip the biopsy, but I personally think I want to know definitively!

[cnm1]

My D doesn't have celiacs but she does have a lot of food sensitivities (wheat, soy, dairy, egg and peanuts). A strict diet has helped her alot. I have wondered about her having MCAD because of all her allergy stuff/flushing etc. She is moving to Boston in Aug for grad school and I hope can see Castells.

louise

[Elfie]

Nope, no celiac, no food allergies. The only thing I am allergic to is certain preservatives in high concentration and unnatural amounts of MSG. Peanut butter gives my stomach aches, but I can eat endless amounts of peanuts with no problem. For a while I thought I might have a lactose intolerance, I switched to organic milk and haven't had a problem since-- and it tastes better! It is one of the only things I can taste the difference with. Was on an elimination diet for over a month where all my carbs came from brown long grain rice (and brown rice and quinoa puff cereal, and pasta) and vegetables and fruit. I also ate free range chicken and wild game. I came to the conclusion that I am the anti-celiac! In two weeks I had lost 14 pounds and never had any energy even though I was eating between 500 and 1,000 more calories a day and many more fruits and vegetables. I usually eat pretty healthy, wild game, low fat, lots of veggies-- but my body needs wheat and other hollow carbs or else I turn into a very grumpy skeletor. I eventually quit the diet because I had no change in symptoms and my weight still was going down after 6 weeks-- I just couldn't keep up with the constant eating. I am usually curvy and it was very scary to weight 125 pounds again like I did at 13 (I'm 5'8" and big-- broad shoulders, naturally muscular, the like) because of a "healthy" diet the docs put me on!

[kayjay]

ok for the past three days I have not eaten any gluten and I am starting to notice a change. I have read everything I could on the topic... including Celiac for Dummies (yes that would be me!).

So many things: neurological problems, IBS, Fibromyalgia, lactose intolerance, anemia, CFS, Reynalds, have been linked to Celiac.

I will keep posting to let all of you know how I make out... It takes months to heal if you have Celiac... but I already know my brain fog is a bit better... and I just talked to my mother on the phone STANDING up no compression and was able to make sense!

I know it is early in this process, and I am not expecting a "Cure" of my H-POTS... but even a small improvement is welcome!

have any of you tried Gluten free- Did it help?

[BelieverEM]

My IgG was positive, but the biopsy was negative for Celiac. Still, when I went off gluten my fatigue, achiness, and brain fog improved quite a bit. Being GF is truly inconvenient and expensive and makes me a bit cranky, but is worth it. I agree: don't rely on the tests-- trust what your body tells you. If you feel better without a certain food/ ingredient/ chemical, hey, we'll take whatever relief we can get!

[MightyMouse]

Have it.

[jump]

Eating gluten-free has been the single most helpful thing in decreasing my POTS symptoms.

I agree with others - it's probably a question of figuring out your allergies, instead of assuming we all have the same allergies - but eliminating gluten helped me a lot.

Also, I was mis-diagnosed with IBS for years... and I never found relief for my GI symptoms until I eliminated gluten.

[Notgivinup]

Kay, I'm going to go along with you and avoid gluten. I'm so sick of being sick.

Tomorrow I'll eat the same thing for breakfast, lunch, and dinner. I'm willing to try anything. Today I didn't eat all day, and felt generally crappy, BUT at 6:00 I had some peanut butter crackers(wheat). About an hour later I felt WORSE. Tired, depressed, slight headache, and mild IBS symptoms. So who knows.

Will post my results along side of yours.

[lieze]

I was tested at Cleveland Clinic and they said I was negative for Celiac's. They must have suspected it huh?

But I have a very weird diet. Can't help it. I think it has become subconscious what I eat and don't and I have noticed that after some meals I just feel bad so I guess some where in my head I have a list and avoid those things but I couldn't tell you what they are. *shrugs*

I have done this most of my life and am oblivious to it.

lieze

[kayjay]

Urrg. I was feeling better overall... still have my POTS But I JUST ATE SALAD DRESSING WITH GLUTEN!

After turning down food all week ( although most potato chips are gluten free HAHA). I just wanted to warn everyone. Gluten is in soy sauce. Soy sauce is in my favorite salad dressing.

This is hard.

For anyone watching their weight and gluten. I made.... well let's call them "cookies" with chick peas in place of the butter. Wash a can. put in blender. add some water. mix with gluten free choc. chip cookie mix vanilla and pure cocoa.

They are not "toll house" but even my hubby was eating them! they are good for breakfast... just tell yourself they not cookies- lower expectations = a happier me!

[erik]

Would be cool if there were a "canceling additive" or some treatment other than complete long term avoidance. Is such an inconvenient & expensive thing both to do a trial run & to deal with if diagnosed. Something like "beano" for Celiac

[sue1234]

Erik,

I second that! A supplement to take with food. Researchers better start working on it, as all of the books I've been reading lately on celiac(5 books), all say that in reality, about 1 in 130 people has some sort of gluten intolerance. That kind of made me think of the amount of autism showing up these days, too--one book mentions gluten may have a connection.

The latest one I'm reading by a physician says that alot of autoimmune diseases can be tied to gluten issues. Simple things like lactose intolerance can be directly linked to gluten, in some people. Put it this way, all celiacs should probably have lactose intolerance, as the place in the intestines that produce the lactase enzyme(the tips of the villi that line the small intestine) are destroyed. Once gluten is eliminated and these villi heal, people find themselves tolerating dairy again. I, out of the blue, 10 years ago became lactose intolerant. Makes me wonder how deep gluten intolerance is not being recognized.

I can not stand up long enough to fix meals, so it is sooooo hard to get on a gluten free diet. I live in a small town, so no places that might even offer the cooked meals.

[kayjay]

Just wanted to update. I am convinced I have a problem with gluten. Going off it did not really help my pots but my pain and IBS problems have been much better.

Until last night when I was making pasta salad for my family. I put a little in a bowl to taste it to check the seasonings. I swallowed a whole bite. I spit out what I could but about 8 hours later my belly swelled up like I was expecting.

Today I feel like I have the flu... everything hurts (hands, elbows, back etc). And I am itchy.

For anyone who has been told that they have Fibro and IBS..... it might be worth a try. Now that I am basically off of gluten I can really feel the effects of eating it.

Wonder how you are feeling cat lady?

And Miss Mouse- found a gluten free bakery in Kennett Square- pizza crust mmmmm.

[iheartcats]

Hello!

I'm a cranky one, on the gluten free diet. My favorite things include croissants, pizza and cupcakes.

I just don't know. I want to know definitively if I have Celiac or not so I'm seeing my Rheum later this week. I think the only thing to do it try to push through the GF another week or two to make it the 3 months, then go back on Gluten and see what happens. I think a biopsy might be the way to find out if I get intestinal damage.

But...as for symptoms. I think I have less aches/pains. POTS symptoms are about the same. Fatigue...that one is hard to pinpoint. I suppose the big test is going back on Gluten, seeing what goes down, then making the decision.

It's hard because it's not easy to be GF. It's quite expensive, too! And Gluten is in so much. I'll update after I talk to my Rheum. I'm all on a mission to see if I really have to be GF or not!

[sue1234]

Okay, it's been a while since Kayjay and others have updated here. I would like to know how things are going!

[iheartcats]

I'm back on Gluten hoping I can have a definitive biopsy in the next few months - I want to know if I have Celiac or not.

Some signs point to no, and a few things are a maybe right now. But...I have to eat Gluten for the next few months and go from there.