To Sunshne24

[Dave56362]

Did you say you have a gluten intolerance? If so how did you find out about it? Anyway my point is that i just got the results back from my Great Smokies food allergy panel today and i found out that i have celiac disease and i was wondering if you or any here has had the great smokies test done for it and if so what was your level? My doctor said i had a fairly high level, mine was 64.35 U/mL "Anti-Tissue Transglutaminase lgA" and anything under 3.99 U/mL is considered ok if i understood it right. Im just trying to get an idea on how bad my sensitivity is to it compared to others. As if i dont have enough things i need to avoid and now it just gets worse.

[bloodstone]

Dave,
i have celiac desease and as far as i know, i'm english, you have to have a small bowel biopsy to diagnose celiac desease, so if they have told you your celiac on allergy alone, don't panic!!
Your probably gluten intollerent rather than full celiac, which is a pain in the .... but you don't run the risks of all the medical stuff that goes with celiac.
If your gluten intollerent then you run the risk of being yeast dairy and soy intollerent, you've probably got hayfever but the good news is if your not celiac and just gluten intollerent once your free of gluten for a while your symptoms will start to get better and your other allergies will probably ease or subside.
Sunshine knows more than me i just thought you might need a quick answer.
www.celiac.com is a great site to get recipe ides etc.
Good luck.

[Sunshne24]

Hi Dave,

Is Great Smokies running tests for Celiac now? It sounds like they are if they ran an Anti-Tissue Transglutaminase (tTG) test. Celiac is NOT an allergy and cannot be diagnosed via any type of allergy test. The TtG IS *highly* specific for celiac...one of the best tests available. Was it a bloodtest that you took and are you currently eating gluten? A positive TtG indicates damage...your immune system is responding negatively to gluten and the result is damage. Technically a Celiac diagnosis is usually made only following a positive biopsy of the small intestine. Some doctors may diagnose celiac based on bloodtests and positive response to diet but biopsy is considered the "gold standard" for dxing celiac. Did your doctor refer you to the GI....that would usually be the next step following positive bloodwork. Was the TtG the only test taken? There is a full panel of tests that a normal doc will run...

The complete blood panel for celiac consists of the following:
Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Total Serum IgA

The EMA and tTG are the most specific tests for the disease. If those are positive the GI would likely do an endoscopy/biopsy to verify celiac. Unfortunately a negative biopsy does NOT rule out celiac but a positive biopsy verifies CD 100%. A biopsy can come back negative if the damage is sporadic and therefore easily missed, the person is not eating gluten or the disease is still in beginning stages with minimal or no damage. If you are going to be further tested do NOT start a gluten free diet. Otherwise just go ahead and assume you have it and start the diet. A positive response to the diet would be a diagnosis in itself. If you start a gluten free diet and then decide *later* that you want the biopsy or bloodtests you will have to go back on gluten for at least 3 months for tests to be accurate.

My doctors missed the boat so not knowing what was wrong I put myself on the Candida diet. My symptoms improved dramatically but I was still getting sick from gluten in my supplements, shampoo and lotion. By the time I figured it out I'd been on the diet 4 months...too late for testing. There is only one lab in the U.S. that currently tests for CD in the stool. Stool testing is more sensitive than blood..since the damage occurs in the intestines there are a greater amount of antibodies present. Eventually these antibodies will spill over into the blood. Many times a person will have a false neg. bloodtest for that reason...the antibodies simply arent present in the blood YET. 6 months later the same person may test positive in the blood. Since the antibodies can be detected in the intestines long after a diet has started I was able to still test positive. These were my results.

Fecal Antigliadin IgA 16 Units (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

Microscopic Fecal Fat Score: 912 Units (Normal Range < 300 Units)

My malabsorption was almost severe due to the amount of damage. This was the explanation given regarding positive results for these tests:

Analysis of this stool sample indicates you have dietary gluten
sensitivity. For optimal health and prevention of small intestinal damage,
osteoporosis, damage to other tissues (like nerves, joints, pancreas, skin,
liver, among others), and malnutrition, recommend a strict gluten free
diet. If you are experiencing any symptoms, these may resolve following a
gluten free diet. As gluten sensitivity is a genetic syndrome, you may
want to have your relatives screened as well.

The numeric value of an antibody is not a measure of clinical
severity. Values of 10 Units can be associated with the same reactions as
the maximum values we measure (200-300).

Interpretation of Fecal IgA to the Human Enzyme Tissue Transglutaminase:
Values greater than or equal to 10 Units indicate that the immune reaction
to gliadin has resulted in an autoimmune reaction to the human enzyme
tissue transglutaminase. It is this autoantibody that may be responsible
for the many autoimmune diseases associated with gluten sensitivity.

A fecal fat score greater than 300 Units indicates there is an increased
amount of dietary fat in the stool which usually is due to gluten-induced
small intestinal malabsorption/damage when associated with gluten
sensitivity. Values between 300-600 Units are mild elevations, 600-1000
Units moderate elevations, and values greater than 1000 Units are
severe.

If you go to their website http://www.enterolab.com/ you will find alot of good info. on gluten intolerance and how it affects the body. The FAQ is very good. As Bloodstone mentioned Celiac.com is great...I've been able to find out everything I've needed to know there. The message board is fantastic. I'm on there everyday...still learning.

As far as the diet goes...it requires alot of research and dedication. Gluten is in just about everything so learning how to find it in labels and such is a task. The diet needs to be taken seriously...even trace amounts of gluten or contamination from a shared toaster can still cause damage. A person who does not follow the diet has a 40-100% chance of developing osteoporosis, cancer, autoimmune diseases, anemia...etc. A good place to start would be the safe/forbidden food ingredient list http://www.celiac.com/st_main.html
Personally...I have not found the diet to be hard...especially having come off the strict candida diet. I feel blessed. Do you have many symptoms? I find that the people who have little or no symptoms struggle more emotionally with the diet. Whereas people such as myself who suffered greatly pretty much embrace the diet. There really is tons of food still available to us...it just takes some time to learn. Believe it or not many people with CD have total destruction of their intestine (villi) yet don't have a single symptom. They were only tested and found to be positive due to a family member having it. That means there are ALOT of undiagnosed people out there. Thats why I've pretty much been trying to help alot of people who have similar symptoms...I believe many of them don't actually have candida. CD has the same symptoms as candida and usually goes undiagnosed. My own doctor (who missed the boat) told me that they usually don't think to test for CD since the symptoms are so varied and sometimes unrelated to the GI area. Its on their top 10 list of extremely common yet undiagnosed diseases today.

Anyways if you have any questions feel free to ask. :)
I'm on disability for a few more weeks and I'm learning all I can.
Also...I'm Rachel--24 on celiac's message board if you end up over there. It's a really *happening* place since there are so many people with CD. You can pretty much get any question answered very quickly.

Good Luck!!

[Sunshne24]

Also rereading your post....celiac is NOT just a sensitivity. One person does not have more of a sensitivity than another. ALL people with Celiac have to avoid gluten for life. Positive results just mean that your body is attacking gluten....the number is irrelevant. Its an autoimmune response and while the immune system is mistakenly attacking gluten (thinking its an enemy) its also damaging your intestines in the process. The TtG is what indicates that this is taking place. By eliminating ALL sources of gluten many if not all of your other food sensitivities may go away after the intestines begin healing. I thought I was allergic to everything at one time but it was only because of improper digestion and malabsorption. I'm eating lots of things now that I couldn't eat a month ago. Also nearly everyone with celiac is lactose intolerant until intestines heal enough...this could take a few months so its best to avoid dairy for awhile. Go easy on your diet for awhile..don't eat alot of processed junk...remember your intestines have to heal.

[Sunshne24]

Also as Bloodstone stated if an allergy test came up positive for wheat, barley, rye or any gluten containing grain...this does not mean Celiac. It means you are allergic...2 completely different things. The fact that you had a positive TtG is indicative of Celiac. Its a test exclusively for CD. If you have any doubts you can persue further testing. Did your doctor explain the diet to you or just say "Oh you have Celiac...have a nice day." It doesnt sound like you were given enough information.

[Dave56362]

He explained some of the foods that have gluten in it and he also explained that if i want to be sure i will need to have a biopsy done following a few weeks of eating gluten and feeling miserable. I am excited and somewhat surprised, i had a food allergy panel done 4 years ago and alot of the foods i was sensitive then no longer show up on the allergy panel. When you said there is gluten in your supplements, what supplements is it in, is it hidden in other fillers? Some of the fillers in my supplements are : Gelatin, rice flour, vegetable capsule and magnesium stearate. Is there gluten in any of those? I really dont struggle with restricting my foods, im not crazy about it and i miss eating icecream and all that stuff but i have been on a very restricted diet for 2.5 years now so this really isnt going to be too difficult adapting. Thanks for the lengthy reply, i need to learn as much as i can.

[Sunshne24]

I was VERY excited with my diagnosis since I was only eating meat, veggies and fish before. The same stuff everyday and even THOSE bothered me sometimes. I think the fact that we've been through so much already with the ups and downs of the candida diet really makes this diet seem easier. I know if I'd never been so sick and then got hit with the Celiac dx I'd probably be devastated.
As far as checking for gluten I usually call the companies to verify. I prefer to only buy stuff that clearly states Gluten Free on the label just to be safe. Once you become completely gf you may notice more severe reactions if accidently ingested. This is normal because our bodies become more sensitive and because our health is improving the reactions are more noticeable. I've reacted to one food that is labeled GF...sometimes contamination can occur in the factories so you just have to listen to your body. If you react then just know that for whatever reason that product is not safe for you.
There are lists out there which I've found can be EXTREMELY helpful. One list is very extensive and lists all the mainstream products which are gf. YES...many ice creams are gf!!! If you have intestinal damage you should hold off for now though. If you're interested I can tell you where to get the list. Any amount of gluten getting in your mouth will stop healing from taking place. Some less obvious things to check are lotion, shampoo, chapstick, toothpaste..stuff like that. Thats why I love the celiac message board cuz they can tell you which brands are safe and it saves me the trouble of trying to research. Also that list has all the safe brands for mainstream vitamins and meds and stuff like that.
Also be aware that a few weeks of eating gluten after NOT eating gluten for awhile is not usually enough time to get a positive biopsy. I'd still go for it but if its negative and the doc tells you you don't have CD..don't believe him based on that. It happens to many people because the doctors are far less knowledgable than we'd like them to be. 3 months on a gluten-filled diet is usually required but if you've been getting enough gluten in while on the candida diet you might still have detectable damage...you never know. Some people have told me they stuffed their faces with gluten for 3 months...made themselves extremely ill...and *still* had a negative biopsy even though all bloodwork clearly indicated celiac. So remember you may not get an "official" celiac diagnosis but the TtG doesnt give false positives.
I've just read too many stories of doctors giving false info. regarding celiac and people suffering many more years unnecessarily. Some people aren't correctly diagnosed for decades and by then some of the damage to their bodies is not reversable. If I've learned anything these past 3 years its to not place my health completely in the hands of the docs and to educate myself fully. I was pretty naive in the beginning...believing everything I was told...now I'm astonished at how LITTLE they really do know. I will listen to my doctor babble on about stuff he really knows nothing about and is clearly trying to ACT like he knows what he's talking about. I just play dumb so as not to get him on the defensive but on the inside I'm thanking God I've done my research. One year ago I was tested for Celiac via blood. I told my doctor I'd not had gluten for at least 2 weeks. He said it didn't matter and I tested negative. I was told I could continue to eat gluten and that I should eat tons of it so that I could gain weight since I'd lost so much. A few months later I was pretty much bed-ridden. I only found out last month that 2 weeks off gluten before a test makes the test completely innacurate. If they had at least treated me with dignity rather than dismissing me off to the phsychiatrist I'd be less bitter now. Now that I have my Enterolab results they are finally sending me to the GI for a biopsy. They want me on gluten for 3 months...I dont think so...they already dropped the ball and I know I'll never get a positive biopsy now. 6 months ago when I weighed 94 lbs. and all my food was coming out undigested might've been a much better time to suggest the biopsy. HELLO.

[Dave56362]

I dont think i really want to be putting myself through misery by eating gluten for 3 months and feeling crappy. I think ill just avoid it and see how things go. Thank you all so much for the info, i have alot to learn about this and it will take time. Once again thanks!

[Sunshne24]

You're welcome...good luck!!!

[Bat Spit]

Hey Dave!

About 2 pages back in my journal is a set of fantastic posts by kidnj about the evils of gluten. She and her daughter are gluten free. It's full of great links too.

My grandmother has celiac. She finds gluten in the most unbelievable places. Being on a low carb diet will help avoid many of them, but it's still everywhere.

Please consider reading The Gluten Free Bible (can't remember the author) and Breaking the Viscious Cycle by Elaine Gottschall, both available at amazon. Tons of excellent science and advice.

I don't have celiac, but I do have a huge problem with wheat and grains, plus a bunch of intolerances, particularly to soy and dairy, which are often related to problems with gluten. I've gotten too much bad medical advice over the years, so I'm busily doing my own research to figure out what my body wants me to do.

[Sunshne24]

I have the The Gluten Free Bible ...its a good book but there are some innacuracies in there...the author gives some bad advice such as saying its ok to take food off a "regular" sandwich and put it on gf bread...or its ok to take a communion wafer if you want. Those things are'nt ok. I also have Dangerous Grains and Wheat Free, Worry Free...all very good books.

[Dave56362]

I also have learned that sometimes it is best to be self educated on the subjects of candida, gluten, and many other things, doctors opinions vary so much. Thanks for the info, i will definately follow some of those links, i am trying to learn all i can about this because it seems at least once a day i slip up and ingest gluten, it is tough to avoid it completely considering i never had to worry about it before.

[Sunshne24]

Yeah....its very hard. Also a couple times I've gotten sick from GF food thats contaminated at the factory. If they process gluten food on the same line the stuff gets contaminated. Right now I'm just sticking to mainly whole foods like produce and meat and only a few processed GF items which I know I dont react to...also rice cakes, peanut butter...stuff like that. I think once I get healed I won't be so sensitive to minute traces of gluten..I'm hoping anyway. Whenever I mention gluten intolerance on the various Candida boards I pretty much get the same reaction...""oh...I'm already gluten free cuz I'm on the candida diet." Sheeesh...they have no idea...its pretty damn hard to be gluten free even when you're informed and TRYING to be.
-RACHEL