I Think I Have Celiac Disease

[nihao]

I am pretty sure I have Celiac Disease. I was diagnosed with IBS for years(by a doctor in Asia) and had every symptom including a blood test that was inconclusive and a positive ANA test. I was living in Asia and Celiac was never even part of the discussion. I went gluten free on my own because I was desperate. I was bloated and losing weight. I have been gluten free for a year and doing much better. When I have had gluten, I get very sick. Last time I tried it, I had incredible diarrhea and was sick for a day with pain. I had also seen a neurologist for a few years for unexplained tingling and loss of feeling at times in my leg and arm. This has disappeared.

I have just moved back to the US and am not sure what my next move should be. Will I test positive if I have been gluten-free for a year? I also have started reacting to dairy. It has come on suddenly with bloating, cramping, constipation and pain when I have milk in my coffee or any cheese. Is this normal?

I am not sure what to do.

[shadowicewolf]

No, you will not. You need to have been eating gluten for 3 months for things to show up properly.

It also sounds like you are having a casin intolerence as well. Which is somewhat normal for celiacs to develop (as most tend to "pick up" intolerences along the way).

You could do the gluten challenge, if it is worth it to you (eating gluten for 3 months basiclly). IF not just continue on your gluten free diet, as there are quiet a few self diagnosed celiacs on this forum. You don't nessisarily need to have an official diagnosis.

[Gluten Free Traveller]

The symptoms you mention sound like you could be celiac. I had very similar symptoms before being diagnosed. If I were you I would start eating gluten again for 3 months. Even though it won't be a nice experience it will allow you to be tested and diagnosed if you are celiac. The other option is just to live as though you are celiac but without really knowing whether you are or not. Personally I would have to know what I was dealing with (as being celiac is so challenging due to issues of cross contamination etc and I'd want to know how careful I had to be with choosing products/eating out etc) but it depends whether or not you are prepared to eat gluten again.

Many people with celiac disease develop other intolerances which fits with how you're feeling after eating dairy.

[eatmeat4good]

Many people are in or have been in your position. Whether to test or not is up to you.

If you do test now you will likely be negative since you are not eating gluten.

If you eat gluten for 3 months there are two outcomes in the testing results- 1. You are Positive and 2. You are Negative. Either way the outcome is likely to be the same result...you will have to eat gluten free because the way it sounds when you eat it you are sick. So if you will be gluten free anyway, you can just stay gluten free and call it whatever you want to. Or...if testing is important to you....try to hang in there for 3 months eating gluten. A lot of people cannot handle the gluten eating for 3 months. That in itself should be diagnostic. Elimination and challenge of gluten is 100% but the testing is inconsistent. I opted to eat like a Celiac...and let the Dr. call it whatever he wants to.

[glutentheintolerant]

Hi Nihao,

New member here. I have recently 'diagnosed' myself with a gluten intolerance. I also developed a reaction to dairy which are similar to those I'd get from when I'd eat gluten but in a milder (and much more tolerable) form.

I am not getting myself tested, I have completely lost faith in our medical system. I went to several GP's and none of them could help me. Got the weirdest suggestions and my complaints were met with severe indifference. Even a hospital visit where an auto-immune disease was suspected, didn't put these people on the right track.

An acquintance that owns a food store recognized my symptoms and told me I could very well have a gluten intolerance.

Ever since I switched to a gluten-free diet (Nearly a year now), I am cured from a life-long depression, my stool is much healthier and I have energy I never had before in my life. I no longer fall asleep after having eaten something that contains gluten. I no longer bounce up and down in weight either.

The way I understand there are three tests methods; you simply stop eating gluten-containing products and see how you react to that (Be careful of dairy products), you get your blood tested (Not always accurate) or you undergo a procedure where they take a piece of your stomach and test it. The latter is very invasive.

I opted for the first. Accidentally ate something containing gluten in the early days of my diet and it hit me like a hammer.

I am curious if I have celiac's disease or if there's something else wrong with me but the way a gluten-free diet makes me feel is enough for me not to want to go through the burden of having to speak to one of those so-called 'professionals' again.

I just call myself 'gluten and lactose intolerant' if I have to explain what I have.

Most people don't know what celiac disease is but they do have some idea of what a gluten intolerance entails.

Hope this helps.

[nihao]

I would like an official diagnosis. I have been contaminated several times since I have been gluten-free and the results have been horrible. I don't think I could possibly go back on gluten at this point, as I have young children and also have a career where I need to have my brain in top shape. I can't be running to the toilet or spending the day in bed. My husband feels so certain after watching what I go through when I eat gluten and how my body changes when I am gluten-free. I just spent years going to doctors. They thought maybe I had MS, IBS, Meniere's Disease, Lupus, I mean I was given just so many possibilities and so much changed when I went off gluten. I was keen to try anything.

This new dairy thing worries me. I am a major traveler and I love food, as I am sure most of you do too. I couldn't ever have imagined giving up bread. I certainly can't imagine cheese. I also can't really drink anymore because I get major headaches. I am going to France in about 6 weeks and the thought of being there with no gluten or dairy seems like torture. I will have to research gluten-free Paris.

Is there any way to get a diagnosis without a gluten challenge? I can't just eat it once? What is the best kind of doctor to go to now that I am back in the US? Am I definitely healed inside now?

[shadowicewolf]

nope, sorry hun. Your body (from what i understand) has to "build up" the antibodies to be able to be tested (and seen correctly).

As for cheese, you can probably still have goats cheeses (From what i've also read, those who can't have cow dairy can have goat dairy).

As for being healed, no clue. Some take up to 2 years to be healed.

As for doctors... eh.... i have no faith in them but try to find someone who specializes in Celiac disease.

[love2travel]

I would like an official diagnosis. I have been contaminated several times since I have been gluten-free and the results have been horrible. I don't think I could possibly go back on gluten at this point, as I have young children and also have a career where I need to have my brain in top shape. I can't be running to the toilet or spending the day in bed. My husband feels so certain after watching what I go through when I eat gluten and how my body changes when I am gluten-free. I just spent years going to doctors. They thought maybe I had MS, IBS, Meniere's Disease, Lupus, I mean I was given just so many possibilities and so much changed when I went off gluten. I was keen to try anything.

This new dairy thing worries me. I am a major traveler and I love food, as I am sure most of you do too. I couldn't ever have imagined giving up bread. I certainly can't imagine cheese. I also can't really drink anymore because I get major headaches. I am going to France in about 6 weeks and the thought of being there with no gluten or dairy seems like torture. I will have to research gluten-free Paris.

Is there any way to get a diagnosis without a gluten challenge? I can't just eat it once? What is the best kind of doctor to go to now that I am back in the US? Am I definitely healed inside now?

I get your concern about travel. My husband and I own a house in Europe and our first trip post diagnosis was a little scary BUT my fears were unfounded. After doing a lot of research I found that many countries (especially Italy) are so aware of celiac. Have not yet been to France since my diagnosis but are going next year (my husband has his AGM there) but each country has a celiac association - I would look that up. You can frequent markets. Don't forget to take along some gluten-free snacks for flights, airports and so on. We bought food and cooked it at our house often - you can do that if you stay in an apartment rather than a hotel in France. The times we did eat out we went to places that grilled fresh fish, etc.

The thing that bugs me about travel to Europe is no longer going to food events/fairs. We used to travel for food alone and now we cannot (usually). And walking by bakeries can really hurt. We were in Venice again in May as it is on the way to our house and that was painful BUT it is amazing how much gluten-free food you CAN find.

As far as healing goes, my dietitian and GI specialist told me not to expect to be fully healed for 2-5 YEARS. My antibody numbers were way off the charts positive and five months later they are negative which is an awesome sign but that does not mean I am healed. YET. So, I do not focus on how many days or months or years it takes - it will take as long as it needs to and I do all I can to help that healing (i.e. I recently eliminated dairy and am taking probiotics in addition to magnesium, Vitamin D3, B12, B Complex, Zinc...

[pricklypear1971]

I was reading somewhere (I think on this board) that in Europe they diagnose Celiac based on feeling better after a gluten-free diet and sick with challenge; in contrast to the US where it requires blood work, biopsy, etc. for most docs.

May be worth looking into since you're going.

[glutentheintolerant]

From what I understand Celiac disease is permanent. It's an auto-immune disease so your body will continue attacking any gluten that enters your system. Not sure if a wheat-allergy is permanent, though.

Your ability to deal with milk products might improve, though. It has for me after several months.

Still, shouldn't eat too much of it or I'll get gas and at some point a visit to the toilet can not be post-poned. Stuff like Yoghurt and porridge seems heavier than cheese and butter.

Also, there are many Gluten-free brands in Europe. Where I live, local supermarkets have a special shelf for just those products. Since France is close to Germany, you might want to keep an eye out for a brand called Sch

[kareng]

Just to clarify on the endoscopy.

They sample your upper small intestine. Look at it under a microscope and look for damage to the villa and little folds. If you are eating gluten free, there should be no damage. They can't put gluten on the samples and get a reaction. It is an immune system disease. You need the whole " system" to get a reaction.