This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
What other illnesses/diseases/etc have you also been tested for? Where would a doctor even begin? How long has the inflammation been going on? The malabsorption of vital nutrients? Could there be something else along with the Celiac not yet tested for symptoms are similar?
How much time, money - blood can you spare?
A non gluten diet is by far the most helpful for those with issues dealing with gluten. All forms of gluten must be eliminated. (Actually, I am to believe no human should digest any gluten. For there is no benefit and it is just a matter of time before a problem shows in tests)
For instance - my daughter was found to have nodules on her thyroid and the left lobe was removed. She was placed on thyroid meds. Her health began a decent downward. She became ill and I insisted that she get tested for mono. Her doctor tested her and found she had an "older" case of mono - but she will always have the Epstein Barr virus showing (which is caused by mono). She was placed on antibiotics and steroids. Never felt 100%. No other tests for anything.
She came back home after finishing school and a new doctor tested her for sensitivities. Positive for Corn, Soy, Gluten, Casein, and a few others. This began the gluten free lifestyle. Then a different doctor she was seeing for problems found her to have Poly-cystic ovarian syndrome.
Which one happened first? Each new diagnosis was months/years in between. No new illnesses/symptoms to date after going gluten-free around 2009/10.
What is in her future? Who knows. By gluten free she is eliminating as much inflammation as she can that will help immensely. We are also organic. Lots of Juicing and Raw Fooding going on. Medicinal TEAS, too Herbal remedies. Homeopathy. SUNSHINE. But we do supplement with Iodine, B-12, etc. We try to find Genetically Modified FREE, too. Our water is filtered. Our air is filtered. Our linens and clothing is organic. We use NO chemicals in the home or on our body.
Her doctor recently began treating her for YEAST in her stomach. Hmmmmm - could this be the original culprit? Is cancer simply fungus? Remove all those items that get moldy: grains for sure and keep one step ahead, I suppose.
With each new set of symptoms or complaints come the tests and hopefully the CORRECT diagnosis and treatment.
Which came first tho - the celiac or the others that symptoms took longer to appear? Who knows. Diet will help. Always. Not just for celiac sufferers. But diet is the cure for Celiac. Maybe for other diseases/illnesses as well.
The good in all that is that your doctor has tested you and is treating you. Your diet will be the main issue. Then your support in the way of nutrients, supplements, vitamins and medications.
I was never tested for gluten/celiac. I was found to have gallstones, ulcers, migraines and IBS. Oh, almost forgot reflux. As soon as the xrays were read and reports written, I was given many prescriptions and a xerox copy of some diet to follow. With the bill ; /
Truly, I feel my main culprit was possibly a system wide yeast infection, but no doctor would consider this. So I changed my own diet. All organic. Now gluten free and no genetically modified.
I will not touch any grain. Sugar. Or those items that contain them. No alcohol at this time, too. Gave up cigarettes. Switched to green teas. It was a major life change.
I have been symptom free since 2007.
My hope is that you give yourself time to heal.
Don't let your guard down. It is not easy, but you are not alone. Take care.
My daughter has two blood tests that will only claim a "sensitivity." Her doctor let her decide if she wanted the more invasive procedure to determine damage/inflammation. She declined the biopsy. He said either way she MUST eliminate all gluten. We have.
It's family members that scoff. Even with the two separate blood tests showing positive results.
Since going gluten-free (I joined her in support -- I am a confirmed IBS sufferer--I did have that awful scope), we are MUCH healthier. Took a couple of hard long years to get here but -- YAY. IT WORKS!!
Best of health and good vibes your way. Gluten is a mess. Don't deal with it
Hello! Congratulations on the wedding coming up!! (My daughter is much like you: reaction to corn, soy, gluten, casein, egg whites) She has Hashimoto's and hypothyroid. Then came the mono/Epstein Barr virus. The gluten sensitivity. Then we found poly-cystic ovarian syndrome.
Isn't mono and Epstein Barr and chronic fatigue pretty much the same? Isn't it a life long virus that can be reactivated?
Have you been thoroughly tested for thyroid issues? Seems much of this goes hand in hand with thyroid and Poly-cystic ovarian syndrome, too. Just a thought.
And, did you know some of the environmentally safe cleaners use soy? I was buying BABY clothing soap and it contains soy Be careful out there.
Here is something I found about Epstein Barr and neck pain, recently:
Authors: Shokouhi G, Naghili B. University/Hospital: Tabriz University of Medical Sciences, Tabriz, Iran Journal: Neurosurgery. 2005 May;56(5):E1158
Introduction: The authors present the case of a young boy whose acquired tonsillar herniation (Chiari) resolved after conservative treatment for the Epstein-Barr virus.
Patient 1: 6 year old boy had headaches in the back of his head for one weak, neck pain, and balance problems. Upon examination, he was found to have a fever and sore throat as well. Neurological exam showed abnormal reflexes in his arms and legs. Blood tests showed some irregularities as did a spinal tap. MRI showed that his cerebellar tonsils had herniated to the level of C1.
Treatment: The doctors suspected that the herniation was due to swelling related to the Epstein-Barr virus and chose to treat it conservatively.
Outcome: Three weeks later the boy was asymptomatic. Two months later a follow-up MRI showed the tonsils were higher, but had not returned completely to their normal position.
Author's Discussion: The authors point out that this is a rare complication of the Epstein-Barr virus and go on to emphasize that in cases where the Chiari is thought to be acquired, treating the underlying problem may resolve the Chiari.
We don't eat any food unless it is prepared by us. Health risk isn't worth it. Even though you "feel" fine, there is no way of knowing if there is destruction/inflammation occurring while going to the restaurant, the party, etc. Know what I mean?
We call the banquet halls about special diet restrictions *I know of a couple wedding venues that allowed the newly married to bring their OWN food - why not a guest, as well?
Family parties -- we bring our own in individual containers, almost like lunch bags. For there is always someone wanting to fork the salad we bring, or try something with those glutenous fingers.
GIFTS! Yes even some seemingly harmless looking baskets of lotions, shampoos, etc are donated due to items containing wheat products.
It does get easier. Good luck and good health to you
UPDATE -- She graduated *with honors. Actually was chosen to represent school in a sales competition in another state and she truly enjoyed it. Had to hire a cab to get to a store to buy some gluten-free foods since the school did zilch - but they reimbursed her the cab fare and food bills so all is ok. I am just upset there is still NO change as far as food sensitivity goes in many schools/universities, etc. Sad. She did well and found a great job a couple months after graduating. YAY.
She is still on the thyroid meds: Cytomel and Synthroid. She does supplement with Iodoral *iodine and her doc is fine with that. He has been treating/medicating for yeast overgrowth. No actual test to diagnose tho. The only sugar she does eat is what is in the apples or berries. Very rarely does she have any type of sugary gluten-free treat like cookies/cakes, etc. I think it might be a good idea to test those with sensitivites for any type of yeast issue. Just a hunch.
She is still fighting weight issues. She works so hard on diet and working out. So I am dieting to help her, too! Can't hurt. We are sooo close to going RAW it isn't funny. BUT we are still dealing with a family member that insists on eating as much GLUTEN as possible and leaving a trail of crumbs wherever he goes The more he is told to clean, remove, cut down, the MORE items he purchases. We have noticed one of the dogs may be allergic too. Not tested. He turns bright pink (hes a hefty bichon). Itchy. Even the brain issues. As if he is trying to claw out of his own skin! Then, the stomach noises. Must be painful for he takes off as if he was pinched. Oy. Gluten bad!!!
I have filed for separation from him last August. Not just because of his total unwillingness to acknowledge his own daughter's health issue by at least cleaning up crumbs, spills, etc - or hey, give gluten-free a try for a little bit, but just the overall lack of empathy. He DOESN'T CARE. Can't be bothered. She can just move. (Gee, thanks Dad). It is what it is. :* (
Daughter and I are going to try to keep the house since we have alot of organic veggies and fruits-- and trying herbs this summer -- started as seedlings now. Our first attempt at organic gardening last year was amazing. We just walked in the back yard and grabbed fresh lettuce, eggplant *thought it was a cucumber plant , carrots, leeks, tomatoes -- strawberries and raspberries. I was shocked I could get them to grow at all!!
It's all good. Hope everyone is feeling great. We are enjoying the return of SUNSHINE and normal temps finally! Happy Spring to all
Hi. Not sure if anyone mentioned personal products that contain gluten. My daughter (college senior) decided to remove ALL personal care items that contained gluten and/or its forms since she also had issues/sensitivities to OTHER ingredients. But it might be something to consider. Then those pesky additives that don't actually list GLUTEN, but are:
Well, could it be similar to cross contamination? I think so. I know my daughter won't use items containing gluten. She does get symptoms: rash, itchiness, etc. But there could also be damage underway once it gets into your bloodstream, via skin. I would not take the chance.
welcome Jill This is THE place for help and suggestions. Right now Im gonna hit the recipes.
I understand how you must stop yourself and it will take some time. I must dedicate half of my cooking time - first, for my daughter's gluten-free meals then prepare my husbands meals. He is slowly coming around to becoming gluten-free to help our daughter, but it isn't easy for him.
I am still learning about cross contamination (sometimes the hard way with daughter becoming ill ). Any questions, feel free to ask.
My daughter had her right lobe removed in 2005 after nodules were found. There was no cancer. Her blood tests revealed Hashimoto's and thyroiditis, so she was placed on T4 only-Synthroid.
Her doses were changed constantly with each new blood test. Until 2009, when her new doctor placed her on Cytomel too. She has been doing very well. He also found that she is gluten intolerant, allergic to wheat, casein/cow milk, soy, corn/maize and eggs. She still has her left lobe. She is also on a very small amount of Iodoral iodine, and feels pretty good in comparison to when she was on the T4 only regimen.
I like this! A great way to sum it up, I feel. I recently replied to a woman who claimed that her husband and young son are celiac, but if they happen to eat "just a little" they don't have any problems with it. So she feels they have a minor case of celiac. She truly believes since they are not symptomatic, there is no reason to be careful, especially with cross contamination. She equates the absence of serious symptoms to the level, or degree, of the disease. "Since they don't get real sick with a little gluten, I don't really worry about it"
When my daughter went gluten free she removed it as much as humanely possible for months, but in a weak moment took a chance on eating teeny tiny bite of gluteny pizza. Disaster!
Learned never to do that ever again. Thru her own experimentation, she just cannot have any. She limits gluten free breads/cookies/etc, just in case. A friend of hers who claims to be allergic to wheat can eat anything containing gluten and wheat, in mass quantity - and have NO reaction. Lucky? Or is there major damage going on inside? Who knows.
Gluten free is just that: GLUTEN FREE. Who can actually know how much is causing serious damage, but not necessarily the symptoms? Why take a chance on that? Unless you have a little window, or get biopsied repeatedly, you are not going to know how much gluten is causing serious damage, even though you are not symptomatic.
Like those who drink alcohol to excess but seem fine. Damage is STILL going on. To the stomach wall, intestines, LIVER. Them may be able to walk/talk/drive just fine, but what is it doing inside, where the damage takes place?
As for the second question, most of my daughter's friends/family collectively agree that food allergies need to be taken very, very seriously. We have one or two that just can't be bothered but I believe that is a flaw with them personally. ( It's just too complicated to adjust menus to accommodate just one or two members of the family. Nice, huh? Oh well.) The majority of the family/friends are serious. And welcome the chance to offer fresh, non allergen containing foods/drinks. Some go so far as to remove gluten residue on counters, etc and prepare so as not to contaminate.
No offers of a gluten free Thanksgiving yet, though. lol.