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
Yes, I've run into quite a few people on the SM/MCAD/IA boards who are either sensitive to gluten or have celiac disease. And YES... the triggers are cumulative! My last attack (which left me vomiting uncontrollably for four hours) happened after a meal of gluten-free macaroni and cheese, bananas, and a bottle of pomegranate juice followed by a huge cup of hot chocolate... yikes! The histamine and heat were too much for my system... and this happened even while taking my normal doses of Zyrtec, Claritin, and Zantac. Thankfully, I haven't been to the ER since April, but I am using a lot of liquid Benadryl... I'm going to give Gastrocrom a try within the next couple of weeks.
I'm one of those people who has really normal tests... normal baseline tryptase, normal urinary histamine, normal complement levels, normal CBC... which has left a lot of doctors scratching their heads. It took six months for one of them to figure out that my immune system is making antibodies to my own mast cells. I wasn't going to give up without an explanation for the anaphylaxis! It's not like you can "fake" or exaggerate that kind of symptom. I'm sorry to hear that you've been to the ER so many times. Have you thought about going somewhere like the Mayo Clinic or Brigham and Women's hospital in Boston?
As to the genetic link... gluten sensitivity has a strong genetic link. Both of my kids are sensitive, although not to the same degree that I am. I have them on a "gluten light" diet. True systemic mastocytosis (too many mast cells) is not genetically linked, but other mast cell disorders can be. One of the most common is chronic urticaria, which is autoimmune about 50% of the time.
This is a good forum if you're looking for one: http://mastcelldisorders.lefora.com/
Thanks JoAnn I remember you too! Although it stinks to have another autoimmune disorder (as you know all too well)... especially one that affects so many different systems in the body... it's very nice to have it identified and be able to treat the symptoms. No more feeling like I'm crazy!
The last time I was here (about six months ago) I was struggling to figure out some ongoing health problems... abdominal pain, nausea, diarrhea, joint pain, headaches, chronically dry eyes, episodes of anaphylaxis, a weird skin rash, etc... After extensive testing to rule out other things (I saw two allergists, four primary care doctors, a dermatologist, rheumatologist, endocrinologist, immunologist, gastroenterologist, opthamologist, and two gynecologists), my doctors and I are finally confidant that I have <drumroll please> mast cell activation disorder (MCAD):
The symptoms and treatment are the same as for someone who has mastocytosis (too many mast cells, which protect your body from bacteria and viruses but also cause acute allergic reactions), but my mast cells just trigger very easily. I still don't know exactly why... I'll probably never know... but in my case this appears to be a systemic (body-wide) autoimmune disorder. All kinds of things will set me off... hot showers, hot drinks, cheese, leftovers with meat, exercise... and gluten (whether in the form of celiac disease or NCGS) is a known trigger for a lot of people with mast cell disorders!
So... I feel like I made a really smart decision more than a year ago when I decided stop eating gluten Thanks to anyone who remembers me... I use the tips I learned here ALL THE TIME.
I did use Enterolab, which seems to be the cheapest. It takes about a month from the time you order the test until you get the results. The downside is that they only type the beta parts of your genes... sometimes it's helpful to know the alpha parts too.
Although the blood test is a great place to start, a genetic test (for HLA-DQ) can be very useful when you still have questions. Typically, the two genes that are most strongly associated with celiac disease are DQ2 and DQ8. It doesn't mean you HAVE celiac disease if you have one of those genes... just that your risk is higher. To answer your question about NCGS... the authors of "Dangerous Grains" argue that the only HLA-DQ types that are NOT gluten-sensitive are the DQ4s. The DQ1 subtypes (DQ5 and DQ6) are associated with neurological problems... ataxia, neuropathy, MS, headaches, etc... and the DQ3 subtypes (DQ7, DQ8, DQ9) are associated with type I diabetes and the immune complex disorders (lupus, RA, Sjogren's, etc...). Someone with DQ9, for example, could have a lot of gluten-related health problems and never get a positive result on a blood test. Same thing if you're IgA deficient. In certain situations, the genetic test can be very helpful.
If your niece does get the test, have her post the results on here!
What kind of special treat are you thinking of? There are a few limits in the gluten-free world (no croissants, no licorice...), but there are lots of possibilities for baked goods. Pamela's makes a chocolate cake mix that you would NOT guess was gluten-free My four-year-old daughter loves to help me stir up a cake and decorate it with frosting I make my own frosting with butter, powdered sugar, and a little bit of soy milk or juice.
Nobody can diagnose you with celiac disease "on the spot." The blood tests should include:
- Antigliaden IgA
- Antigliaden IgG
- Tissue transglutaminase IgA
- Tissue transglutaminase IgG
- Endomysial antibodies (EMA)
- Total IgA
Personally (unless you have tons of money to throw around) I would go one step at a time. Start with the blood test.
Yes, but it's usually not a big problem. There are people on this board who are IgA deficient.
Have you ever had your thyroid checked? That's a common cause of low body temperature.
A gluten-free diet might help a lot, but it's not a cure for everything. Celiac disease is the only autoimmune disorder with a known "cure" (stop eating gluten and your immune system stops attacking your intestines).
OK... here's my basic understanding of how immune complex disorders work.
The basic function of your immune system is to clear dead cells, virus, and bacteria (things that don't belong) out of your system. One way it does this is by generating antibodies. The antibodies link up with specific "antigens" (things that don't belong) to form "complexes." Then another set of proteins called "complement" surround the complexes so they stay soluble in your blood and can be quickly flushed out of your body by your liver and spleen. All kinds of problems can happen with this system...
1) Liver and/or spleen get overwhelmed
2) Not enough complement
3) Too many antigens (like an overwhelming bacterial infection)
4) Not enough antibodies (this happens to people with AIDS)
5) Too many complexes (can easily happen when you have an autoimmune disorder)
(There are more...)
Anyway... when your immune system gets overwhelmed, the complexes start dropping out of your bloodstream and getting lodged in various parts of your body, particularly the skin, joints, muscles, kidneys, eyes, brain, and cardio-vascular system. If the effects are mild (and temporary... like when you have a virus) you get things like achy joints or a headache. However... if the complexes start building up in large numbers you can get some really nasty effects like vasculitis, migraines, stroke, glaucoma, arthritis, kidney damage, etc... The immune complex disorders (lupus, RA, Sjogren's, MCTD, scleroderma, etc...) all work around this basic principle, but have different constellations of symptoms. In RA, for example, the complexes tend to cluster most heavily in the joints. In scleroderma the skin is under attack.
I hope that helps... minor swelling should be nothing to worry about. A long-lasting fever can be a sign of a chronic infection, one of the factors that can cause your immune system to become (temporarily or sometimes permanently) overwhelmed.
BTW... complexes are made during active celiac disease (the antigens include gluten and your own intestines), so that could explain why the swelling is gone when you're off gluten
There are several different types of rashes that can occur in people with immune complex disorders (like rheumatoid arthritis). I had a blistering, itchy rash on my hands, arms, and lower legs that I thought for sure was DH! I had it biopsied (one punch biopsy of a lesion and one biopsy of a clear spot next to the lesion), but it came back negative. Have you tried hydrocortisone cream? It might work, but if it doesn't then a biopsy is not a bad idea. DH only responds to the gluten-free diet and Dapsone.
BTW... the swollen glands and fever are also classic signs of an immune complex flare
I really think you're doing the best you can! You've made SO much progress
Something to think about... I checked out a basic textbook on immunology (to help figure out a problem I'm having) and I ran across an interesting idea about autoimmune disorders... their original purpose may have been to serve as a defense against cancer! I know people with disorders like Sjogren's Syndrome and untreated celiac disease have an increased risk of lymphoma, but just thinking about my own extended family... tons of autoimmune disorders and very little cancer. What is your family history like?
I'm really sorry to hear about your mom's friend. It's natural to reflect on your own circumstances when someone close to you is suffering.
Considering that you're IgA deficient, a blood test is useless. If you're still eating gluten you might want to go looking for a gastroenterologist who's willing to do an endoscopy. You could also get tested for an allergy to wheat, but is it really that much more difficult to avoid rye, barley, and oats? I find that rye is very easy to avoid! Barley is not that difficult either once you realize that "brown rice syrup" = barley in disguise. There are sooo many other grains The genetic test could also give you some answers. Don't panic if you're not a DQ2 or DQ8 (although you could be)... post the results on here and other people will help you interpret them.
How old are your kids? I've heard a couple of other stories like this and it seems to work best when the kid(s) say, "Daddy I can't eat that."
If your kids are still really young (under 5, for example) then it can be difficult to get a firm diagnosis. Lots of false negatives. If you want to try a gluten challenge you probably need to give it a good three months... eating gluten every day. IMO, your kids are better of the way they are, even if it's just a gluten-lite diet. Childhood is such a critical time for growth and development. Three months is a long time to be poisoned on a daily basis when you're a kid. The other option (assuming your ex would believe it) is to get a genetic test. I was never able to get a firm diagnosis, but when I found out I have the DQ8 gene I felt like I was really smart to stay on the gluten-free diet. You can do a genetic test at any time and order it yourself... you don't need a doctor's permission (although your insurance probably won't pay without it).
ANA is a general term for autoantibodies (antibodies designed to destroy your own cells). Since you've been gluten-free for three years I doubt that's the cause of the positive test. IMO, you would be smart to see a rheumatologist to check your sed rate (ESR), rheumatoid factor (RF), and look for more specific antibodies. In lupus, for example, it's not uncommon to make a variety of antibodies to your own blood cells, proteins, etc... That could definitely be the cause of your back pain. Hopefully it's not How old are you?
I'm not aware of this happening in adults. I'm also not aware of any scientific tests for intolerances that accurately predict your symptoms. IgA and IgG tests tend to change over time depending on what your diet is like. For example... if a person with celiac disease stops eating gluten, his or her anti-gliaden and ttg antibodies should disappear after a while.