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
In the end, one's response to the diet may be the best test of all.
For others reading along who may be considering a dietary trial, it really is best to do at least the blood testing before experimenting with diet.... if you think you will ever want to seek an official dx. Then no matter what the results... I always recommend a dietary trial... because far too many people have problems with gluten despite negative celiac disease testing. I have heard of others who feel their condition worsened with the challenge.
You could try ordering up the blood tests quickly, although antibodies can drop off rapidly. A positive would be meaningful, but a negative could be false. If you opt to do a gluten challenge, it should be for 4- 8 weeks. And, if the results are negative, they suggest continuing the challenge and retest at 6 months and a year.
So... if you've already seen improvement... and would return to a gluten free diet no matter what... is it worth the official proclamation? Only you can decide, but nobody needs a doctors prescription to make dietary changes.
The genetic testing... you could do... but be careful how you read the results. Most doctors will tell you that you can't have celiac disease without having one of the main HLA types (HLA DQ2 or HLA DQ8), and they usually only look for those two specific types. My family has HLA DQ1. I have known several biopsy proven celiacs with this type, but it is also associated with gluten sensitivity without villous atrophy. This type does seem to be more common in those with some neurological complications, like my daughter, but she also had classic diarrhea and skin problems.
Enterolab does not limit their testing to HLADQ2 or DQ8, so if you decide to go that route of genetic testing... I'd recommend doing the cheek swab through Enterolab. BUT... gluten sensitivity is possible in just about genetic type... so it may be an interesting thing to know... but may not tell you as much as you hope. Just don't let anyone tell you that you can't have celiac disease or gluten sensitivity without having HLA DQ2 or DQ8.
Here are some references for you... on how quickly blood antibodies fall and the duration of a gluten challenge. Hope this helps!
Joseph Murray, M.D, is a reknown gastroenterologist at Mayo~
I may have a recommendation for you by the end of the day for a primary care doctor who understands celiac disease. My DIL is in medical school at Mayo, and she shadowed a doctor in the area who has celiac disease herself. I'm just not sure if she was a primary care doctor or not. I'll let you know soon as I find out.
Well, the doctor is in Family Medicine but she is Rochester...Margaret Gill, MD
But, my DIL is going to ask around about someone in the cities. Are you looking for a primary care doc who "knows" celiac, or a gastroenterologist ?
Also, you may want to check with a local support group... celiacs recommending celiac doctors probably give the most trustworthy recommendations. I always get a little nervous about doctors recommending doctors....unless they really know them. I know Margaret Gill is very knowledgeable because my DIL talked with her and Dr. Gill has celiac disease, but unfortunately she's not in the cities.
Minneapolis/St. Paul Area Support Group
Contact 1: Carol Hansen
Northland Celiac Support Group (formerly Midwest Gluten Intolerance Group)
Tel: (651) 489-0645
Contact 2: Barbara Wojcik
Tel: (651) 653-4523
I was born in Milwaukee, grew up in Greendale, attended UWM, and have resided in Kenosha for the last 20+ years.
I've been gluten free for eight years, along with my 13 year old daughter. I've been busy advocating about gluten sensitivity ever since we realized my daughter has gluten sensitivity. She doesn't have celiac disease, but had GI, skin, and neurological symptoms related to gluten. Try googling The Gluten File and it tells her story..can't post the link here.
I don't post here very often anymore, but I browse occasionally... and felt compelled to post on this Wisconsin thread! Anyway, I would be happy to help any of you who are new to this, especially those living in Kenosha.... so don't hesitate to contact me via email at this addy I've learned a lot over eight years .
For those in Kenosha looking for a support group... the Milwaukee Sprue Crew meets at the north side library every couple of months~ you can contact Bev Lieven. I attended a few meetings in the beginning, but just find online support groups easier! A local group can certainly help with best doctors, best places to shop, and have a more personal touch.
Here is a listing of WI CSA support groups... including Milwaukee's group.
And websites of two other WI groups:
East Central Wisconsin Gluten Free Group - http://ecwgfg.gfnavigator.org/
Wausau Celiac Support - http://www.celiacinwi.org/Home_Page.html
I also received this not long ago... looks like a group may be starting up in Racine as well.
Increased cell volume (MCV) points to B12 deficiency, but I wasn't sure what increased RDW might mean. I tried looking here. It says that an increased RDW could be associated with pernicious anemia (B12 deficiency)
But, since B12 deficiency can shows as a high MCV, and iron deficiency shows a low MCV... if you have both B12 deficiency and iron deficiency, it can sort of offset and show normal. I would suggest asking for a B12 level, methylmalonic acid, and homocysteine test to look for B12 deficiency. Also, a high folate level can cause a false increase in B12 level and mask a deficiency...which is why the methylmalonic acid and homocysteine tests become important.
I know much less about iron deficiency. As for iron deficiency and ferritin levels, you ask a good question. Both my daughter and I show normal iron tests, but our ferritin is low 20's. Our doctors think this is fine, but I have certainly read that optimal ferritin levels should be in the 70 range. Still, too much iron is dangerous so you don't want to supplement unless you really need to. Sorry I don't the answers on iron tests.
I have a great full paper on diagnosing B12 and folate deficiency, and lots more about B12 deficiency. If you are interested, please email or pm me.
I should have known better. I did check the date, but missed the YEAR. I was thinking.... WOW... that is a long thread for an April 17th post....thinking a few weeks, not a few weeks plus a YEAR!!! And no, I didn't read all thousand plus responses to find out .
Glad to hear if things are going better for you now...
The research is ongoing, but it is looking at both gluten and casein sensitivity in regard to developing autoimmune Type 1 diabetes. Have you seen any of the research about zonulin? I have accumulated a lot of the information here... hope you find it of interest.
A zonulin blocker is in clinical trials.... hopeful for treating celiac disease, and possibly preventing type 1 diabetes in high risk patients of future generations.
Oh my~ Neither pernicious anemia or celiac disease are rare!
Yes, B12 deficiency can result from celiac disease, and may self correct over time. HOWEVER, it is equally possible that you also have pernicious anemia, and will need B12 for the rest of your life. There are antibody tests for pernicious anemia, although they say 25% of those with pernicious anemia will not have positive antibody tests. B12 deficiency is nothing to fool around with, as left untreated it can cause neurological damage and other symptoms that could be permanent.
You do have the option of taking oral B12 rather than the shots. Studies have shown oral B12 to be as effective as the shots, even in those with malabsorptive issues. Still, there are some who will say that oral B12 doesn't work for them and they need the shots, and I have no reason not to believe them. There are always exceptions. Still, you might try the oral B12 and see if your B12 level comes up with that. Its cheap... about $8.00 for a three month supply, and a lot easier than shots. Just look for the methylcobalamin type of B12 (you may need to order from an online vitamin store, but most health food stores now carry methlcobalamin), and take 1000-2000mcg daily.
I was dx'd B12 deficient about six years ago, before I discovered I might be gluten sensitive. My doctor started me on the oral supplementation, and my B12 level came up to normal within months. However, for the first several months I suffered a 'hit by a truck' fatigue. I felt drugged. Totally exhausted. Turns out, that is not uncommon in those in the early phases of recovering from a B12 deficiency.
I tested negative to the antibody testing for pernicious anema (anti-intrinsic factor, anti-parietal cell) and the antibody testing for celiac disease/gluten sensitivity (anti-tTG, antigliadin). Symptom improvement has convinced me I am gluten sensitive. I am highly positive for Hashimoto's thyroid disease (anti-TPO), which actually came first for me. These things frequently come together. Have you been tested for thyroid disease (especially if you are fatigued?).
In any case, because I was negative for the pernicious anemia antibodies, I decided perhaps it was the underlying gluten sensitivity that had caused my B12 deficiency. I stopped taking it, and within weeks my symptoms began to emerge (for me, most were neurological). I won't make that mistake ever again. The oral B12 is so simple to take.
Please don't make the mistake of stopping the B12 and forgetting about it. Bringing the level back up to normal doesn't mean it will stay there. So, once you have been low in B12, don't stop taking it without monitoring it closely. Easier to just take the oral B12 .
I have accumulated lots of info about B12 deficiency~ please check it out~ it includes info on oral dosing, celiac and B12 deficiency, pernicious anemia, etc~
One of my daughter's had a comprehensive stool analysis done by Doctors Data (I think) that looked for bacterial overgrowth, but I think you are right that a breath test is often done~
Good thing to be looking for... though. You might find some other things to consider listed here:
While my daughter's diarrhea dropped in frequency from 6-8 times a day to 1-2 times a day within weeks, it was over six months before we saw a formed stool of any sort. I've heard others say it took them a year to feel well. But, so many other things can co-exist... it is good to be looking for those things!
This thread is really, really long... but I haven't read here in a while... so I thought I might as well add my 2 cents~
About six months into a gluten free diet, my daughters symptoms began to re-emerge. We found she also needed to remove corn.... however, some five years later... she does ok with corn although we try not to overdo (still avoid High fructose corn syrup, corn based pasta, etc). She is 100% gluten free, and mostly casein free, but we've been able to allow corn back in , and she can eat apples and strawberries again, too. We try not to overdo those things that gave her problems in the past.
You said you had allergy testing done. Did you have IgG food allergy testing? Usually, in the allergist office, you get IgE testing only. The IgG testing is a little controversial yet, although more labs are entering the market... and studies are coming in to back up IgG food allergy testing.
If you check The Gluten File linked below my name, there is a page on Food Allergy that lists some of the labs doing IgG food allergy testing. I know a few people who have done this testing, and say they have improved after removing all the foods they show reactive to. With some of these labs you can order on your own; others require a doctor's order.
There is also a page in The Gluten File called Not Celiac? It also has some information on what else to look for in those with celiac disease who are not improving on a gluten free diet alone. It might be worth browsing.
My daughter with gluten sensitivity reacts to casein with gastrointestinal symptoms (stomach ache, gas, bloating, diarrhea). Apparently this is not uncommon. Thankfully, while she also had neurological symptoms with gluten, she doesn't seem to get neurological symptoms with casein (although some people do... I've heard of both seizures and peripheral neuropathy related to cow's milk).
Here is a March 2007 study about casein sensitivity...suggesting that about 50% of those tested also had casein sensitivity.
This is similiar to past findings.. another often referenced study...
SOY can do it too~
eMedicine: Protein Intolerance
Here is some info I've found about fibromyalbia/CFS. Even without meeting the diagnostic criteria for celiac disease, many people suffer from gluten sensitivity (and possibly other food sensitivities, too) that may contribute to their symptoms.
However, if this person hasn't been tested for celiac disease, they SHOULD BE, before removing gluten from the diet. Then, even if the tests are negative, they might still improve on a gluten free diet... and might look for other food sensitivities as well. There is a page in The Gluten File linked below my name on delayed food allergy testing (IgG rather than IgE), too, which is something not commonly tested by mainstream allergists and can cause chronic symptoms.
I had a low positive of 160 homogeneous, and 80 peckled (less 40 negative). My only known autoimmune disease is Hashimoto's thyroiditis (anti-TPO > 900). They did look for some other antibodies, but none turned up for me. Celiac Disease and Hashimoto's can cause an elevated ANA from what I've read. as well as many others.
P.S. Can they go away? YES! I know somebody who was diagnosed with Sjogrens and had a high anti-ANA. She totally reversed her symptoms and her antibodies by dietary changes, removing gluten, casein, soy, corn, and possibly a few other things I can't remember.