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
You need to talk to your doctor, but I don't believe Flonase is gluten-free!! I know that sounds crazy but if you are going gluten-free you definitely need to check all your medicine.
My son on medications (in his case was on the nebulizer inhaled medication pulmicort)... his full effective lung was 420. Off medicine and with gluten it was 300. OFF gluten and no medicine it was 530. He was better w/o medicine and no gluten. My doctor considered his asthma 'food induced' because the numbers don't lie and it's a 'medical' test!
Some people also have dairy problems and ALOT of inhaled asthma medication contains MILK - lactose is the main mechanism to deliver medication. I can't tolerate dairy and I have seasonal allergies so I have to take a dairy free inhaler. Definitely it will take you some time to work out the food problems with the Asthma in order to see if it helps you! I'm sorry it's so complicated but that is the way the drug companies have made it.
No that was the primary reason I stopped eating gluten - severe back pain. As a note, my dad (who has also stopped eating gluten) was diagnosed with Focal Segmental Glomerial Sclerosis (spelling?) (FSGS) and he was getting nearer to needed a kidney transplant. He went off gluten and his kidney numbers improved to the point where he may NEVER need the transplant!! I assume my back pain may be involved with the Kidney. Gluten can affect any part of the body and my only sign was an abnormal IgA Anti-gliadin blood test and gastritis in my endoscopy. After being gluten free for 2 years now I haven't had any back pain UNLESS I get cross-contaminated and I notice it almost immediately. If you are feeling better gluten free you are intolerant.
BTW I had the gene test and came up as a DQ8 celiac gene (which is not the typical DQ2). Hope this helps!
Bouts of constipation and diarreah can be signs of celiac or gluten intolerance. Some of your symptoms sound alot like my own - including severe constipation and back pain. So far anyone I've known that I've seen put on miralax ended up testing positive for some kind of gluten intolerance. Asthma can be caused by reflux, hence shown by your "gastritis" in the stomache - which is the only thing that showed up on my endoscopy. Just so you know, going gluten-free removed my gastritis AND asthma! It also did so in my son who was (at age 5) complaining of fatigue and being treated for Asthma. Taking him off gluten his Asthma completely disappeared and the doctor couldn't believe it either.
You should clear up the bowels within a few days but the Asthma can take upto 2 MONTHS to clear up.. so you should try gluten-free for a few months before deciding it isn't working (if you don't feel much different).
Just for those curious, here are the ingredients in the new gluten-free Cinnamon Chex: (Just found them YESTERDAY at our local Super Target)
Whole grain rice, corn meal, sugar, fructose, corn starch, canola oil, rice flour, salt, cinnamon, brown sugar syrup, yellow corn flour, soy lecithin, color(Yellow 6/Blue2), Peanut Flour, nonfat milk, Vitamins and minerals added. CONTAINS: Soy, Peanut and Milk
If you have a nut/peanut allergy these are no good for you - and milk allergy as well Otherwise, they are gluten-free!
I had the same reaction you did to the blood tests - only positive to Anti-Gliadin IGA. Every other test and Endoscopy negative. I tested positive for the DQ8 celiac gene and have been on a gluten-free diet for >2 years and feel great! If I eat gluten now though I get a typical 'celiac' reaction - abdominal pain, gas, bloating, diarrhea.
#2 (gluten-free diet) is the best choice and see how you feel. If you feel better I wouldn't go back.
My son tested negative to all the testing AND had the endoscopy and was still negative. He had all the same symptoms you described - below the 1th percentile in weight, diagnosed failure to thrive. He never had pain/diarrhea because he just stopped eating when he started to feel sick. Anyhow, he's now been gluten-free for 1-2 years. He gained 15 lbs since then, 6 inches in height, went from the <1th% in weight to the 20% BMI (at least he's now within the lower normal range).
The doctor won't diagnose Celiac unless they have a positive test and/or endoscopy. I was told instead he must be "allergic to gluten" and for him not to eat it. The doctor couldn't deny the positive results of the gluten-free diet. They took approximately 1 month to show the signs but it showed as a big spike in his growth chart.
As a followup I did the genetic testing and I am a DQ4/DQ8 (celiac gene) and my son is DQ5/DQ8 (sensitive/celiac genes). Not sure it told me anything new but you CAN have negative testing and still have gluten intolerance/allergy. The most "proof positive" for a protein allergy is a food elimination diet. No test is guaranteed to be 100% accurate otherwise to diagnose a protein intolerance/allergy.
I am also Catholic and since our church only gives out the Eucharist (and not the cup normally) I had to make special arrangements. The priest has a separate small chalice and keeps it separate. I tried the low-gluten hosts first even though I figured I would react.. and I did. If you react to very small amounts of gluten, then it is the wine (Precious Blood) only if you are Catholic.
My fourth son (of 5) was gluten-free only starting at about 2. We were worried a little because he wasn't talking 'normally' it seemed. When we took him gluten-free, within about 2 weeks his speech picked up dramatically. I would say if you have a strong family history (like I do) of gluten issues, I would definitely keep them off gluten. A 'trial' of gluten though is interesting to see what happens. It turns out I haven't had problems with trials because we managed to get 'cross-contaminated'. It turns out though that my second oldest son- his symptoms were fatigue and asthma - that it's almost IMPOSSIBLE to tell he had a gluten reaction until he starts feeling tired much later - so you really need to do it in a controlled fashion ONCE and see what changes occur. Each of my five boys has completely different reactions to gluten (unfortunately.. they are all negative).
I was IgA antibody equivocal only and never "positive" on any of the testing. Under age 3 the testing isn't very good either and my son was like your daughter and I went through it all - including the endoscopy - and got NOTHING from it except the doctor "ruling out" celiac in my case. We went gluten-free anyways and I saw a HUGE improvement and have been such now for 2 years. I can't have even a TRACE of gluten or I have a reaction. After going gluten-free I find I am more sensitive. My father hasn't gone completely gluten-free (cheats like you mentioned and thought it might be ok) and he is feeling better but STILL having some problems. I am having no problems unless I get cross contaminated. It's your choice but cheating isn't worth it.
No doctor has EVER questioned me saying I have "celiac" - as a matter of fact I don't even have a diagnosis - nor do any of my children. If a doctor wasn't supportive, I changed doctors. I actually ended up helping my internal medicine doctor to diagnose herself with Gluten Intolerance - and now even my internal medicine doctor feels better!! (Also good to have that kinda support too ) I am not going to pursue a diagnosis either because with the way insurers are they will want to limit insurability.
Your daughter should go gluten-free too - she should NOT have to be on miralax all the time - that is ridiculous! If you feel better gluten-free you have a problem with gluten - testing results don't matter as much as how you feel. All of your symptoms are that of celiac disease - ESPECIALLY your daughters! BTW - all the supplements you add won't help if the food contains gluten and makes her sick and malabsorb. I would try gluten-free with the help of your GI and see if she can come off the acid inhibitor and the miralax. So far EVERYONE I have known that's been put on miralax (about 5 people) I suggested gluten-free and 100% of them came OFF of Miralax within 2 WEEKS!! Please Please try the diet and see what happens before you keep medicating your child.
Only thing to watch for - if you have milk problems, Zyrtec (namebrand) has milk in it.. generic zyrtec does NOT have milk ingredients. (It's part of the inactive ingredients). Allegra I do believe has no allergens at all in the ingredients.
Are you still on this after going gluten-free? One thing to remember is if you take medicine for a condition (say gluten causes it) and you go gluten-free then you need to re-evaluate ALL medications because you may not need them and taking them could actually put you at risk.
My father stopped his antiacids a week after going gluten-free when he started feeling better and hasn't needed them since. He was having problems for 30 years - his stomach had to be 'unblocked' due to damage to the emptying valve, he had H-pylori, etc, etc.. Anyways.. you could have low stomach acid because if you don't eat gluten you shouldn't need the pepcid and taking the medicine when you don't need it could also cause problems.
However, if you are STILL having stomach acid problems while gluten-free then you need to find what is causing it because it should actually completely go away if it's just gluten and like others said there may be another food culprit.
Yes - both myself and my oldest son had frequent nosebleeds. Now that he is gluten free, the nosebleeds stopped. He had such frequent nosebleeds he was referred to a specialist to test his sinus for abnormalities (etc..) and they all came back normal, negative, etc. This included tests of blood cell counts, etc because the doctors were extremely puzzled he should have such frequent nosebleeds. They ended up saying he was always picking his nose.. but seeing it just start bleeding was really weird and he wasn't just picking his nose.
Interestingly enough, I am DQ4/DQ8 and my son is DQ4/DQ5. If the DQ4 gene is the culprit in the nosebleeds.. that would go against the fact the DQ4 gene is the only gene that doesn't exhibit gluten issues.....
BTW the nosebleed frequency was as many as 3-4 PER DAY sometimes!! Now it's about 1 every 4 MONTHS... My son also had bedwetting and potty training issues which may be associated with it.
My son also is on medication for Anxiety as well - in case this helps any.