Does it really matter if you have Celiac or "just" an intolerance?
 

I went gluten free in April 2013. Daughter went GF in hopes of alleviating digestive problems and recommended it to me 2 weeks later, she was so improved.

I requested to be tested for Celiac. Don't know what test was done, but my doc said I don't have Celiac. I have not had a biopsy done, and really don't want one.

Within 10 days of going GF, there was marked improvement in my chronic pain, energy level, and stiffness! I was experiencing restorative sleep for the first time in decades. Also, B-12 levels have skyrocketed.

Not all my problems are relieved, so there is more to be investigated, but the bottom line is that I cannot eat gluten!! If I slip up and indulge in something containing gluten, I will FEEL it within 3-4 hours, and it will stay with me sometimes a day or 2. The effect on me is an increase in myofascial pain and stiffness.

To me, it doesn't matter if I have Celiac or not - the treatment is the same, right? I just can't eat gluten. Do I need to find out if it's Celiac?

Welcome to the NeuroTalk Support Groups. :Wave-Hello:

I have limited knowledge I'm sorry, but hopefully someone will respond to your questions soon.

Thanks, Lara. Actually, I have another post in the Autoimmune Forum that is much more important to me, but have had no replies help with. Is this board usually so "quiet"? Do you know of anyone here who is knowledgeable about thyroid that you could ask to look at my post there about Hashimoto's? I'd sure appreciate it.
Thanks again for the welcome!:)

My drs were convinced that I had celiac. I have been tested several time and the results were always negative. My primary dr and I decided that I should try going gluten free so I did. I did this several years ago and noticed much improvement. I removed gluten 100%...EVERYTHING I use is GF, toothpaste, medications, soaps, lotions, make up, shampoo, hair products, etc. You need to make sure you are doing this as well otherwise you are not truly gluten free. Some say that using gluten containing products topically is fine, you will not react to it. I do not believe that at all because I break out in a terrible rash if I use something containing gluten on my skin. I think they say 60% of what you put on your skin is absorbed...seems to me that would cause a reaction.

I know that in order to be tested for celiac, you cannot be gluten free. You have to be ingesting gluten for the results to be more accurate, not sure that is worth going thru all the pain and aggravation for a test. It is great that you have found some relief!!

Good luck,
Nanc
:hug:

Some of the separate forums here get quiet from time to time. Others are extremely fast. Depends. Hopefully someone is able to help you in the Autoimmune Forum soon.

Don't forget to check out The Gluten File, which is listed at the top of the page here in the "Stickies". It's an invaluable resource and set out so well it's really easy to navigate.

The Gluten File
http://neurotalk.psychcentral.com/thread1872.html

more here too

Useful sites and resources
http://neurotalk.psychcentral.com/thread1121.html

Hi Nanc - Thanks for responding! I know about not going GF for testing. After 4-5 mo. GF, I went back on it for the test for 3 miserable weeks. Near the end of 3 wks. I got REAL sick with a Noro-virus and thought I was going to die. I at first thought it was because of eating gluten again after being off it, and was freaking out. I won't eat it again for any test- just causes me too much pain.

My meds are GF, I have NO gluten containing foods in my house, but haven't explored the bath and beauty stuff. I even avoid the bread, pasta and cereal aisles in the grocery stores. I make my own soap, so that's not an issue. I know of GF toothpaste I can get, but how can you check for gluten in shampoos and cosmetics? I rarely wear makeup, but do use anti-aging creams, etc. Can you suggest some brands or products for me to check out?

Again - thanks so much for your reply! :)

Thanks for the links Lara! Going there now..

I just wanted to also leave this which is in The Gluten File. It may be of interest to you...

https://sites.google.com/site/jccglu...thyroiddisease
Autoimmune Thyroid Disease
The Gluten File

Very good!
Yeah, I am thinking a lot of my probs. are related.
TY

Sorry you got so sick! Glad you know about the testing, I did not know about that until I went to a new gastro dr for testing. He said at that point there was no need to test me, if I was feeling better off gluten, just keep going with it. I was fine with that. When I get accidently glutened, it is not pretty! My husband is not GF, so there is gluten in our house. It is way too expensive for our house to be completely GF. I have RSD and many other issues, I cannot prepare meals very well. He can only use one hand/arm, so he doesn't cook either. We are VERY careful not to cross contaminate, his food is separate from mine, I have a separate toaster, colanders, etc.

As far as bath and beauty products go, I have searched online and found a lot of info. There are some lists online that lists names of ingredients that you need to also look for...I will look for those for you. The Body Shop has a GF list that they will email you if you request it. If there is not a store near you, they do have a website. The shampoo I use is DermOrganic, it is labeled as GF. You can find it online or at Ulta. I found a huge bottle of it at TJMaxx for $19.99 and the first bottle I bought at Ulta was $18.99 for 1/3 the size! If you are near a Whole Foods, they have a lot of GF products in their cosmetic dept - lotions, creams, shampoos, hair styling products and the staff there is so helpful! I use either Peter Rabbit or California Baby body lotions (baby lotions) because they are more gentle and I am also allergic to shea, as well as some other ingredients. I find them at Whole Foods and Target.

I do not wear make up any longer, too hard to apply with RSD in my hands. It amazes me that gluten can be in everything though!!

Wow, Nanc!

You sure have a tough row to hoe...my heart goes out for you. What is RSD?
I have a lot of sensitivites - chemicals, metals, band-aid sticky - even (now don't laugh at this....) the thread-like stitches they use to sew you up after surgery!!! My early surgical scars are WIDE! I have to have staples. Completely screwed up my Breast Lift! :eek:

I'll be near Mom's Organic Market (MOM's) in a couple weeks. I'm kinda stuck in the boondocks here - not a whole lot of the specialty places nearby. Also I don't have a car, and public transportation here is lousy. I'll be sure and check out all their B & B stuff. Glad I'll be there right after I get my disability check! GF ain't cheap....

After doing some reading here, I realize I have to get new pots and pans, too!! I often wonder if I have been exposed unknowingly, because I'll have "effects". I've probably been poisoning myself every time I cook! I just bought a new cutting board, so...

Thanks so much for all of you help!!!
:hug:

RSD is Reflex Sympathetic Dystrophy, now known as Complex Regional Pain Syndrome (CRPS), it is a chronic neurological syndrome characterized by: severe burning pain; pathological changes in bone and skin; excessive sweating;
tissue swelling; extreme sensitivity to touch. RSD/CRPS is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. It develops in response to an event the body regards as traumatic, such as an accident or a medical procedure. According to the McGill Pain Index, RSD is the most painful chronic disease known.

I have had RSD for 23 years now. It began in my face and now I have it throughout most of my body. I am unable to work now :( There is a RSD/CRPS forum here that I normally post on, but happened to see your post :)

Not laughing at you about the stitches....I have weird reactions to weird stuff too, glad I am not alone. I had my two spinal cord stimulators removed Thursday and my husband has to change my bandages daily...it is torture! I have all these red, irritated spots from the adhesive...so aggravating.

You very well could be exposing yourself to gluten unknowingly. I did not go as far as getting new pots and pans when I went GF. I scrubbed them very well. But if it is something porous, it can hold the gluten...like baking stones, seasoned iron skillets, colanders. I have baking stones for GF and separate ones for my husband and they are stored separately. It is good that you got a new cutting board!!

You are right, GF ain't cheap at all! Since you do not have a car and live in the boondocks, online ordering might be better! I order from Amazon all the time :) Hopefully you can find some stuff at MOM's!

Good luck!
Nanc
:hug:

I am a Celiac and have read some of your questions and concerns...
 

Hello, to those of you who are Celiac and/or GF intolerant,

I was diagnosed as having Celiac Disease almost 3 years ago...which was what they called "latent" since my many tests during other problems never showed that in my blood work or even a biopsy given of my liver, or the biopsy of my gall bladder that was removed.

Needless to say, the medical testing for us is still in the process of "getting a better control". The important part is how "you" are feeling, your own personal assessment between you and your Dr. Everyone who is a Celiac does not have the same symptoms...there are over 100 types of symptoms in the real world. And of course there is the GF intolerance, which is more typically symptomatic in its own right.

I am a member of a great Celiac site which has so much information concerning this disease. It is called Celiac.com and has a great deal of inforamtion especially for those first few months of going GF.

Remember that no question or problem you are having is ever considered "insignificant"....this is something I am learning and dealing with my Dr's on a better communication.

Blessings in your desire to feel better and live well. Joanie:)

Sorry I've been off here for a bit. There's a Mom's Organic Market near my daughter. When I go up there next time, I'll take a good look at their health and beauty stuff.

I am pretty careful about what I eat, and, yes! it's ridiculous all what contains gluten! Mostly I eat meat (local, organic and not grain-fed) and veggies and fruit, nuts, seeds, etc. I try to include flax, chia and hemp in most things I prepare. I have GF bread in the freezer, but don't eat much of it.

I would be in bad shape if I was allergic to shea! My son-in-law is from Ghana, where they make it, and they often give me a few pounds of it. I make my soap with it, and use it as a body moisturizer. My skin is so dry, it drinks it right up.

Hey there! Hopefully you can find something at MOM's!

It is good you are careful about what you eat and that you can eat veggies, fruits, nuts, etc. Unfortunately, I cannot eat much in the way of fruits and veggies and no nuts. I have interstitial cystitis (painful bladder syndrome) and cannot eat that stuff. So, in addition to avoiding gluten, I have a huge list of foods to avoid because of IC...too complicated.

It is awesome that you get all that shea and can make your own soap! I was at a women's show and there was a booth there that had pure shea, I broke out from it :( It makes me mad because it is in so much stuff!

Geeze, Nanc - How in the world can you get all your nutrients?? This is awful- foods making us sick. I am now researching foods to avoid if you have thyroid problems (I do). Crap, crap - more goodies I have to give up.
Well, hopefully they will not make me give up chocolate!!! I could live on that..:winky:

That is a good question...I am so deficient in potassium, vitamins D & B12. I take D3 drops and get monthly B12 injections. Because most food makes me sick, potatoes were like my safe food. Well, I have to avoid them now because of my bladder. Also can't have chocolate (argh!) and tea...I love iced tea :( Hopefully you can keep your chocolate!!

Good Lord! You can't eat anything "healthy" for you. Will this ever get better for you? I sure hope so. I was deficient in B12...got shots for several months, then oral. I went gluten free and now B12 is soaring. That was part of this puzzle for me. Now tackling my whacked thyroid. I don't think chocolate affects that..hehe.

Seriously, though - I can't imagine going through all you do and maintaining my sanity. God, what a pity party I would have - constantly! People didn't used to have all these complicated allergy/immune problems. I think modern life and all we are exposed to is making people (and animals, and bugs....) sick. Not to mention GMO foods. I have so many chemical and metal sensitivities. If I smell certain odors, my windpipe starts closing up.

Eliminating gluten has drastically improved my health, but my thyroid is not right. I will be tested for antibodies in a week or so, and hopefully begin a better medication therapy. I just raised heck in a letter to the hospital director where I get my care, as I have had thyroid problems for years, but the minimal testing they do shows fine. In August (after suffering for 40+ years) they tested Free T4 and Free T3. Both are in the basement. What do you know......I do have a problem.....

I'll keep you in my prayers, maybe they'll help get you feeling better. I sure hope so. Take good care of you.:hug:

Well, once I eliminate all the high oxalate foods and the "avoid" foods on the IC diet for a while, I can reintroduce foods one and a time. I have to figure out which are my trigger foods and which do not trigger pain. I am just startting the process. It is very complicated because some foods that are safe on the IC diet contain high oxalates...they contradict each other. So, hopefully eliminating everything will not be permanent. I have gastroparesis (slow digestion) which is common in folks with RSD. I cannot tolerate some of the safe foods on both low oxalate and IC diet lists....like certain apples and bananas. SOOOO FRUSTRATING!! I am allergic to pork, shellfish and some fishes (my throat closes). Because of the pork allergy, there are so many meds and supplements that I cannot take (no gelatin). My mom says that I get all the allergies from dad's side of the family. He and his mom had so many allergies...crazy! It does amaze me how people nowadays have so many issues. It is truly insane!

Did you get tested for the metal and chemical sensitivities? I had allergy testing numerous times with allergists, but they only test environmental and foods. The dermatologist tested some other things and found an ingredient in creams or cosmetics that I reacted to (urea). I think I have other sensitivities/allergies but don't know how to find out.

Elliminating gluten definitely has improved things for me too. How do I stay sane?? I have no idea...lol. My husband is really a gift. He helps me make it thru everyday. I had to stop working in Dec 2012, I receive disability now. It was the hardest thing for me to do, but I just couldn't handle it any longer. I had to stop and take care of myself for a change. Always put myself last.

Glad you fought about the testing. Wow, it is unbeleivable to be having problems that long and not get tested properly. I never heard of free T3 & T4, had to look it up. Glad you don't have to give up chocolate...whew! Hope you can get a handle on your thyroid soon!

Thanks for the prayers, will take all I can get :) Sending some back your way. Take care, Nanc
:hug:

I'm glad you will be able to start adding things back in to your food list. That is just WAY too complicated for me! I haven't investigated if any other foods bother me. I would say that nothing seems to bother me, but I didn't know gluten bothered me till I gave it up and noticed the HUGE difference it made in my energy, sleep, pain and stiffness. I may have to give up some foods for my thyroid - we'll see after I get all these tests run.

I'm a veteran and get care at the VA. They won't do allergy testing. :(

I am having a fight with them about getting the tests I need for my thyroid. If you don't fit precisely into one of their normal little boxes, they don't want to help you. In the past 6 months, I have learned so much about it, and unfortunately, I now know more about my problem than my Endo. doc does! That's sad.....

Well, Girl, I gotta go to bed....Hope you have a good night. :hug:

My Dad goes to the VA also. It is great to get his check-ups and stuff, but such a hassle sometimes. He has many issues and it gets complicated. It amazes me how doctors are...I often see drs and have to educate them on RSD/CRPS. It is sad, but good that you are educating yourself.

I need to hit the hay also. Hope you have a good night too :hug:

It's easier if you are Celiac because many people don't respect Gluten sensitivity as an illness.
I tell people I am Celiac, its easier that way.

Welcome Grundle. :Wave-Hello:

Hello,
My husband's family has celiac disease and both he and my daughter have celiac disease. My husband's sister thought that she had celiac disease but after getting tested it ended up that she had an ulcer that mimicked the symptoms...all she had to do was to take care of the ulcer. She doesn't need to eat gluten free.

I would definitely get tested but you have to be eating gluten for a few weeks before the test.

BTW our pediatrician also told me that our daughter didn't have CD. I just stood firm and told him that I wanted to blood test--period. It is a genetic disease.

Best to you,

This is the first time I have looked at this forum. I have Parkinsons Disease and a member of the PD forum. In December I have bad intestinal crisis after consuming way too much delicious freshly ground kamut grain sourdough bread that I had started making. Gas and bloating extreme/ eyes became dry red and painful and I felt so bad. I had been almost gluten free before September when I received the sourdough starter for this wonderful bread and started making it. I went to the health department and she concurred that it very well could all be stemming from celiac or sensitivity...either way try going gluten free again. I am still making the bread for others that love it. Managed to not eat any for several weeks. This week ate a corner that broke off when I was bagging sliced bread for a friend...and within hours my eyes hurt and were so red and dry again...hadn't had that for several weeks...arthritis flared worse also and bloating discomfort.. Not fun is it??? Have created a few recipes and tried some from books that work well and will share some when I have time if you all have a recipe post...gotta go See ya soon Aunt Bean

Actually people dont respect "gluten-free" diets, because many people think its a vanity thing. Many people go on gf diets, they cheat a little, and they dont even know why GF diets are. THEY DONT realy gf diets are for people with gluten sensitivity,wheat allergy, or celiacs.

I've read ENOUGH about gluten and I never have been tested, doesn't matter to me...but I like gluten free products much better, I buy a bag of gluten free cookies now and then and live them much more than wheat cookies. Same with crackers, I don't eat pasta anymore, some mac and cheese from whole foods hot deli bar sometimes, have not bought a loaf of bread for 6+ yrs...started to buy gluten free and didn't like this heavy bread, so quit it all....I use beautiful organic lettuce leaves as a sandwich wrap.

If and when I buy a burger out, I'll get a toasted bun, but that is not often. I am not strict but I do prefer the taste overall of gluten free products.

I don't have stomach issues, I do take digestive enzymes and probiotics daily and DGL for stomach protection as I do take ibuprofen daily for OA and Fibro pain.

The treatment is the same. You sound like your intolerant, like me. I have also heard if you don't stay away from gluten, at least most of the time, it can turn into Celiac. We don't want that!

Hi there! Same sitch here (not celiac, but intolerant). Im pretty much off it, but can have small amounts with little to know trouble. It still sucks though! I used to love baking. Now i have pretty much stopped because its just too depressing. GF baking just doesn't come out right...unless it's a box mix, but then that's loaded with sugar and that's not really allowed in my diet either. :/