Possible Celiac and my experience with doctors...

I don't have Celiac disease, but I am wheat intolerant. I did the same as you, round about 2 years ago. It took another year to finally get rid of gluten. I started on the wheat belly diet and felt so much better. As I lost weight, and started feeling better I would introduce other types of things into my diet. Wheat was my kicker. I still can't eat it without feeling like complete crap. My experience is that I get horribly bloated, gassy, and end up with a sick stomach when I eat wheat in anything. I am so miserable that I feel like throwing up, and that's not even a relief. I have found that I can eat wheat free flours though. There are many different types of flours out there. It could be that you have just one type of intolerance. I now have to look through every ingredient in all the foods I eat. Even seasoning packets, to make sure it's not there.

I would let your Dr. know what happened, but for a true Celiac diagnosis you would have to be eating gluten for the Dr. to be able to test you.

I have celiac and it took me a while to get diagnosed. Part of the problem is that most doctors are taught that celiac is a very rare disease when it may not be as rare as was once thought. Like others have said, you would have to be eating gluten for several weeks before you could have the test done. I also wanted to mention that some people with celiac do experience a rash called Dermatitis Herpetiformis. I think getting a diagnosis one way or the other is important and worth going through the discomfort of eating gluten for a few weeks. If it is a wheat intolerance you may be able to eat some things with gluten without having issues and some people can tolerate low levels of gluten in their diet. But if you have celiac you must strictly avoid all products with gluten (gluten is found in more than just wheat). For me the diagnosis gave me peace of mind. Of course only you can decide whether getting the test is right for you. I wish you the best of luck!

nvmomketo wrote: »

I also have celiac disease, and it took over 3 decades to get a diagnosis after first going to the doctor with "tummyaches" while in early grammar school. Doctors can be a bit clueless about celiac since it is not common, although that is getting better. This is what I would tell or ask your doctor:

List all your symptoms. There are hundreds of symptoms and associated health problems from celiac disease, with the most common not typically associated with a "gut disease" - anemia. List ALL that you have. Here is one list: https://onedishcuisine.wordpress.com/2015/03/19/300-signs-and-symptoms-of-celiac-disease-adults-and-children/

Please know that to have accurate blood tests one should be eating gluten (equivalent of 1-2 slices of bread per day) in the 8-12 weeks prior to testing. If you do a shorter gluten challenge (like 6 weeks) you should eat more gluten.

The blood tests to ask for are:

• tTG IgA and tTG IgG (tissue transglutaminase) - most common
• DGP IgA and DGP IgG (deaminated gliadin petides) - newest tests
• EMA IgA (endomysial antibodies) - similar to the tTG IgA but tends to show more advanced disease
• AGA IgA and AGA IgG (anti-gliadin antibodies) - an older and much less accurate test, some doctors believe a positive can indicate non-celiac gluten sensitivity too (NCGS)
• total serum IgA - a control to ensure you make enough IgA for accurate testing; 5% of celiacs do not

Get as many tests done as possible. The tests can miss a quarter of all celiacs. I know MANY celiacs who were positive in one test but negative in the others. Get As many tests done as possible.

Fecal tests are not very accurate. Their false positive rate is very very high. I would avoid them if possible.

Scratch tests are for allergies, as far as I know. Those are IgE mediated. Celiac affects the IgA and IgG parts of your immune system. It is an autoimmune disease. A scratch test may tell you if you are allergic to wheat, but there is not known allergy to gluten.

The endoscopic biopsy only needs 2-4 weeks of a gluten challenge, but make sure they take 6+ samples to biopsy.

If you get the skin biopsy, make sure the sample is taken from beside the active dermatitis herpetiformis rash. Those with DH frequently have negative blood and endoscopic biopsy tests.

Best wishes

You're correct My relative had previously done blood tests for celiac and they came back negative, but with the higher false negative tendency of these tests, celiac was still on her radar. Until she realized that she was allergic to almost everything she had been eating So in her case-negative celiac blood tests with positive food allergy testing figured out what her issue was.

I had the scratch test done for regular allergies because I was getting 7-10 sinus infections a year with no obvious sinus issues. Turned out I'm allergic to everything and uncovered a bunch of food allergies I'd never been aware of. I'm allergic to wheat, rye, peanuts, almonds, oranges, and soy. Luckily, my allergies are mild. I can still have a little of most of these things (except almonds since they really set me off) without any intestinal discomfort. If I eat them together or have too much my intestines get very mad at me.

BeckaShine wrote: »

Thank you all so very much for your input here!!!! I have never had any tests done for allergies. I had my gall bladder removed when I was 16 (now I'm almost 31) after a year of blood and radiologic testing because I was having horroble stomach problems even back then. My issue has gotten worse over the years so whose to say I never need the gallbladder out in the first place? They said the ducts weren't functioning and the gallbladder was normal when they saw it after excision. I'm definitely going to read through all the resources I can before meeting with my doctor again so I can be prepared to explain to her everything I stated here and learned. Hopefully we can work together or she can give me a referral to a specialist who can help. Even if its not celiac, I do want to know whats making me sick.

Best of luck to you as you navigate through all of this! And yeah, definitely ask about having an allergy scratch test done (your doctor can refer you to an allergist who will do it in office). It doesn't take too long and it doesn't hurt (my daughter was around 9 when she had it done and she said it tickled lol). You'll be able to eliminate a bunch of possible suspects with the one test, some that you may not have ever thought of-(when my sister-in-law tells people she's allergic to tomatoes and broccoli they look at her like she has two heads, lol).

Best of luck...and some things to know.

1. Getting a diagnosis for celiac disease as you stand now is NOT risk free. Most doctors will treat it as though it is, though, and ask that you go back on to a gluten diet for 4-6 weeks, eating at least 2 slices of wheat bread a day, before getting tested. And it's treated as though it's risk free because, well, you aren't a diagnosed celiac yet so asking you to eat gluten is not a big deal, right?

However, if you DO have celiac disease, it's important to understand what is being asked of you. Our tests for this are, at this point, so crude that we can only detect how the body is reacting to damage, and we can only detect it if it's ENOUGH damage. So, basically, if you are a celiac and you have started to heal on a gluten free diet, you are being asked to damage yourself, again, until you are sick enough for them to be able to test it.

And the things is...people who have been gluten free and go back on gluten, if they are celiacs, can frequently have WORSE reactions. Sometimes...it's just crummy but no big deal. A bit of tummy aches, pain, the runs, whatever. But sometimes, it's very serious. As an example of what happened to some folks I know when they went back on gluten: one had her immune system tank so badly she had to be put into isolation, one started bleeding internally, a number started having such bad vomiting diarrhea that they had to be hospitalized. And there is a risk that if you damage yourself again, you won't heal as well as you did before...it's kind of like having a cut, having it start to heal, and then cutting it again in the same place, you know?

Unfortunately, you can't know HOW you're going to react before you do, either. Some people still absolutely feel it's worth testing. Some feel like they will monitor the situation so if they start feeling very, very bad they will stop the gluten trial. And some don't wish to go through it and settle for a gluten sensitivity diagnosis, if they can get it. Or are waiting for celiac tests which do NOT require you to harm yourself in order to get tested...just so you can be told to eat gluten free like you already were. with nothing else, because there's no medication or anything with the disease anyway, you know? There are tests being researched now, but the only one available is god awful expensive, is very difficult to do right, most insurance won't cover it, and only two labs in the USA do it.

2. If you do choose to go gluten free without a diagnosis...check out how to avoid cross contamination of gluten to make sure you're being celiac-level safe in your diet. It's more intense than a gluten free diet that just avoids ingredients. Also, I'd second the 'get an allergy test' idea. With the rash issue, it seems like it might be helpful.

3. If you had that dermatitis rash and you do have celiac disease - good news. You can get diagnosed for celiac disease through the rash, too - the rash gets biopsied, although you will want to educate yourself on how the biopsy is done, because frequently dermatologists may not be aware that it is done differently than most rash biopsies and you have to have it done twice. Obviously you can't get a rash biopsied if you aren't eating gluten, but normal day-to-day activities, you WILL get gluten contamination periodically, so you are likely to have a rash some time in the future that you could have biopsied.

Also, good to know this, for those who DO have dermatitis herpetiformis rashes, they more frequently test as a false negative on the blood tests. This may be because the blood test looks for the antibodies that attack the gut, and folks with the DH rash may have more elevation in the antibodies that attack the skin, which is not what the blood test looks for.

Honestly, you may have better luck with a rash biopsy. If for nothing else than because IF you get a rash after one ingestion of gluten, you could eat gluten once, get the rash, get the biopsy, get the diagnosis...rather than eat gluten and be sick for over a month before you can get tested, you know?

4. If you do have celiac disease, experts recommend that your entire family be tested. They will be in a MUCH higher risk category, and because celiac disease can trigger at any age, and do damage before you even have symptoms, it's recommended that any with negative results get retested every 2-5 years, or if they start having symptoms.

Just re: symptoms - there is no hard and fast rule as to how quickly, or how badly, a celiac reacts to gluten in terms of symptoms they can feel. Some have it immediately, some have it within hours, some it's even the next day. And for some, they have NO symptoms they can feel, because there is actually not a lot of correlation between what symptoms you feel and what damage is done. Those who get no symptoms are called 'silent celiacs' and as you can imagine, it takes them forever to be diagnosed, typically.


I wish you well with this, and hope the doctor appointment goes very well. Although I would highly recommend double checking every, single thing you are told about the disease online, with fellow celiacs. Unfortunately, outdated information on celiac disease is not just outdated, it has been shown to be incorrect in terms of scope, or sometimes simply completely wrong. But it's the information that a lot of doctors know, so they can literally give you information that is the opposite of what they should - in a study a while back, diagnosed celiacs were shown to have the worst post-diagnosis care from doctors, out of all auto-immune disorders. We end up having to advocate for ourselves (I say this as a gal in a family with three generations of celiacs, all but one of whom had to figure out what they had themselves and go to the doctor to request testing).

Take care!

You can go have the test done to see if you really are allergic but if it requires you going back to eating gluten just to be tested it's not worth it! Keep going gluten free if that's what makes you feel best!

If you suspect Celiac, talk to a rheumatologist.

I discovered that I am gluten intolerant (undiagnosed Celiac) based on high liver enzymes (which then went back to normal after eliminating gluten). The Celiac blood test is not terribly accurate, and the only longterm solution is to eliminate gluten (diagnosis or not). Therefore, I have stopped trying to get an official diagnosis. My doctor agrees with my diagnosis of myself and doesn't see any reason to continue to try to "prove it."

I also discovered pollen allergies on my own & also avoid gluten & corn because they make mt tgroat swell. I see an allergist on the 11th. We all know our bodies the best.

heatherheyns wrote: »

My only addition to all the good advice you've gotten is to know that since celiac is an autoimmune disease, it increases the odds of other autoimmune illnesses. This matters because without an official diagnosis, many doctors won't consider that connection. They may not think you or your family has an increased risk of the other illnesses without that testing and may then not he proactive in other areas. Also, if you have a new doctor, without an official diagnosis you can end up being seen as just another person following a fad, which can lead to not being taken seriously. Just some things to consider, but as others said, it's a risk vs reward since you'll have to eat it to do damage to get a positive result.

This!