What Do You Think, Could I Have Celiac Disease?

[Curious121]

Hi everyone. I am very new to this message board and I have read through a few threads but I am still at a lost if my symptoms are pointing toward Celiac Disease or IBS. I don't know if it is IBS though because I am not always constipated or always dealing with diarhea. So, basically I am just going list my symptoms and hopefully someone can give me a little advice! I really appreciate it!

Okay, so, here are my daily symptoms:

Constant excessive gas - MOST PROBLEMATIC SYMPTOM very embarassing and really hurts my social life.

Almost constant stomach pain right after I eat, usually painful bloating, nausea, some times my intestines seem to swell. Not sure if that is what is going on there.

Constipation until I eat something that really disagrees with me and I have very painful diarrhea.

This is embarassing...

My hair is thinning, I am always getting sore throats with swollon lymph nodes. I sometimes have a hard time consentrating - mostly as of late. Headaches. I have a constant head ache under my right eye brow especially when touched ( I am sure that means nothing to celiac disease). For most of my life I have been thin and as of late I am gaining weight. Can celiac disease develop into more of a problem? I have always been

Types of foods that really hurt me

Ice Cream, yogurt, thick cheesie pastas, almost all pasta but thinner sauces are better, a lot of cheese, a lot of bread, over eating anything is always very miserable. Basically everything hurts me, mostly gas. There is not an hour that goes by without embarassing, excessive gas.

I would rule that I am lactose intolerant but I can eat cereal with milk and butter on anything- which to me makes no sense.

My family all has stomach problems, but no one has been to the doctor for it.

Basically I am always in a state of discomfort. Do any of these symptoms sound like Celiac Disease? Should I get tested anyway? Thank you so much for your advice. I really appreciate it.

[Mango04]

Hi - You could have celiac disease. It wouldn't hurt to get tested. If the test comes back negative, you might eliminate gluten (and maybe casein) from your diet anyway and see how you feel. Your symptoms definitely seem to point to the possibility of food intolerance or celiac disease.

I see that you've clearly pinpointed the foods that really hurt you. If you don't want to go through the testing, why not eliminate those foods? You shouldn't put something into your body that you clearly know hurts you. I know eliminating all those foods can seem daunting, but it will be well worth it if your symptoms go away.

Being able to eat cereal with milk or butter doesn't neccessarily rule out the possiblility of lactose or casein intolerance. Sometimes when our bodies aren't working properly it just doesn't make sense. If you entirely eliminate suspect foods (for at least 3-4 weeks), and then slowly reintroduce them one at a time, you'll most likely become more in tune to how your body reacts. Lactose intolerance can also temporarily occur in people with celiac disease, and sometimes goes away after gluten is eliminated and the gut heals.

Enterolab is another testing route you might look into. Many on this board have had luck with it. You'll find some people here who've been traditionally tested through blood work/biopsy, others who used Enterolab, and others who figured it out for themselves. Some people have luck with food journals as well (where you basically document everything you eat and how you feel afterwards).

Sorry you're having a hard time. I hope you find some advice on this board that helps. Most important thing is to listen to your own body and your own instincts.

[Michi8]

Welcome, Curious121!

It certainly wouldn't hurt to get tested...definitely worth ruling everything out, right?

In terms of lactose intolerance there are different levels of lactose in different dairy products. Yogurt and hard cheese have very low to no lactose. I believe butter is pretty low too. Some people with lactose intolerance can tolerate small amounts of milk, like in cereal. For me, ice cream or anything made with cream or milk is hard to digest. You could test this out by trying lactaid pills with dairy (like a bowl of ice cream) to see if it helps you.

Michelle

[Lisa]

Welcome to the Board:

Let me begin that celiac has over 200 symptoms, and you have listed a number of them, which may a indicate a strong possibility.

There are two ways to determine Celiac:

1. Go on an exclusive diet that totally eliminated 100% gluten from your diet. Use the results to determine your positive or negative response.

2. Continue to eat gluten and get tested, either through blood work, or an endoscopy exam.

When a doctor indicates that you have IBS.......often it stands for "I Be Stumped" (at least around here )

I am glad that you have found us. I know you will find a vast amount of information here. And really good people that have been where you are now.

Keep those questions comm'in

[Ursa Major]

Hi, and welcome to this board. Yes, all your symptoms point to possible celiac disease as well as casein intolerance. IBS really isn't a valid diagnosis. If your bowels are irritated, there is a cause that can be eliminated. I say the cause in your case appears to be gluten and casein.

As has been mentioned, you have three choices: Just decide to try a gluten/casein free diet to see if it helps. Or keep eating those offending foods to get traditional testing done by your doctor. Or stop eating gluten as well as being tested by Open Original Shared Link. You don't have to stay on gluten for their tests, which are easier and more sensitive than the traditional blood tests and biopsy.

Whatever you decide to do, do it soon, before you develop other autoimmune diseases or get even sicker. It looks like you finally figured it out.

[Curious121]

I really appreciate everyones input. I have decided that I am going to get the tests done. I will keep posting my questions and concerns - this place is great. I am almost hoping my tests come back positive just so I will know what is wrong with me and feel a little normal. If it comes back negative I will have to work extra hard at figuring out what makes me sick and what doesn't. It is hard for me to tell what really hurts me because almost everything does from fruit to soups to candy and even eggs. Everything causes discomfort. I have tried a food journal which helped a little but no matter what I eat I ALWAYS have very excessive very uncomfortable gas.

Again thank you all so much for you input and I will keep you posted on my test results or if I have any questions before I have them done. Oh, well here is a question. Do I need to go to a gastroenterologist for thest tests, who exactly is the best person to contact? I have a family doctor and that is it. Do I call him and ask who he recomends? I have had a Barium Enema before (NOT plesant - this is where I was diagnosed IBS) and this was performed by the gastroenterolgosit. Would they have been able to tell if I am Celiac by the Barium Enema? What a god awful experience! If you don't know what it is, which I am sure you do, I had to take a series of laxitives, which after reading about the colonoscopies and endoscopies many of you are familar with. The Barium Enema, however, there is no sedating. I am wide awake and after a full day and night of painful diarrhea and being very sore down there, they stick a balloon up my butt and inflate it. THen they shoot barium into my intestines and look at an xray of my intestines. I got to see it, pretty neat looking, but VERY uncomfortbale and I would perfer to pull all my teeth out than go through that again. Anyway, could they have been able to see at that point if I am Celiac?

Thanks again for your input! I really appreciate it!

[spunky]

What is irritable bowel syndrome? Something irritates your bowel...could be gluten...I had similar symptoms and went gluten free to see on my own (was already dairy-free, by the way), and kind of went back and forth between symptoms and not knowing for a few months. Finally, right about at the beginnning of my 7th month gluten free, I was amazed at how I do NOT have these symptoms anymore. Sometimes little hints of flare ups, but nothing whatsoever like how I used to feel all the time.

My symptoms were never diagnosed, I just suffered for about 10 or 15 years, got sick of suffering becuase it only got worse as the years went by, did a lot of reading, guessed, tried gluten free, waited it out, and BINGO--got my answer! I am finally just about symptom free! I would say if it isn't the gluten, some other food tolerance is likely. Once in a while ibs can be caused by other organic problems, but by far, from what I've read, the most likely scenario is something you're eating that your body cannot tolerate.

I would find a doctor(?) (or someone with experience and knowledge of this) who knows about this to help guide you to finding a real answer so that you can just be healthy again. IBS is not a real answer. You don't have to live like that.

[Fiddle-Faddle]

Hi, Curious 121, welcome aboard!

I agree with pretty much everything everyone else has said. Going gluten-free is the easiest, cheapest, and most fail-safe way to a definitive answer.

Blood tests for celiac do not have false positives, but they DO have false negatives, plus a number of us on this board have had positives that the doctors did not know how to interpret (most doctors in this country are sadly clueless about celiac), so we were told that we did not have celiac, when in fact, we did.

In my opinion, the supposed "gold standard" of diagnostic tools for celiac, the biopsy, is only accurate if your all of villi are already completely destroyed. If only some of them are, the doctor might biopsy a healthy area, which would give you a negative result. Or your doctor might not be experienced enough to be able to tell the difference between healthy villi and flattened villi.

IBS is merely the title to a list of symptoms (that's what a syndrome is), and, since those symptoms just happen to be the same symptoms caused by celiac, well, it's pretty safe to assume that a heck of a lot of people with IBS have celiac. It's kind of ridiculous that a doctor would say, "You have IBS!" as though he has identified a disease, when in fact, all he's saying is, 'You have the following list of symptoms!" Which you already knew, because that's why you went to the doctor in the first place.

[Guest nini]

I was told at one point that I "just had IBS" and was also told my daughter "just had IBS"... puhleeze!!! All the testing is useful for is screening for the possibility of Celiac, it can never ever ever rule it out, so in my humble opinion it's a waste of time to go through testing when you can very simply try the diet and see if it helps your symptoms. Oh and you do have to give it a really good effort at being 100%gluten-free and you have to give it time, minimum 6 months before you decide if it's helping or not... yeah it seems like a difficult diet at first, but really and truthfully it's not, especially if you stick to a diet of foods that are NATURALLY gluten-free. There are literally hundreds of foods that are naturally gluten-free out there, they just may not be in your usual repertoire of eating.

Positive dietary response is THE MOST VALID diagnostic tool there is, the blood tests and biopsies can only confirm it IF they are positive, but as has been mentioned already, there are many false negatives (no false positives though). The tests just aren't as sensitive as they need to be yet and the Dr.s and Labs for the most part just don't know how to interpret the results.

I did luck out eventually and got a Gastroenterologist that not only recognized all my "IBS" symptoms as Celiac, but said that my blood tests were through the roof highly positive and that I did not need the biopsy. The dx was confirmed with my overwhelming positive response to the diet. My daughter's gi is still clinging to his dx of "IBS" even though she did not improve on the "IBS diet" but improved tremendously on the Celiac diet. Fortunately my daughter's pediatrician accepted positive dietary response as proof, and my daughter remembers how she felt on gluten and how she feels now and she does not ever even feel tempted to cheat... (other than the Oreo incident early on...)

[Nancym]

I also had IBS that mysteriously went away when I stopped eating gluten. Later I got tested by Enterolab.com and found out that both gluten and casein (dairy) are a problem for me.

Forgive my indelicacy but...

I always thought nasty, stinkin' gas was just part of being a healthy human being because EVERYONE in my family was gaseous. Little did I know it was all dietary for me. I remember a type of cookie I used to get and always having the worst farts after eating them. I used to call them "fart bombs". Going gluten-free took me most of the way to cured, but I had to get off the dairy to get the rest of the way.

[lonewolf]

Curious 121 - welcome to the boards.

Add me to the list of people who have been diagnosed with IBS - first they said I had "colitis" and then changed it to IBS. I don't know if there's really a difference. I lived on Tums for years, even though they didn't help much and thought that gas, cramps and stomach aches were normal for me because I had a "sensitive stomach". I also have thin hair, thyroid issues and sensitivities to dairy, soy and eggs. I've never been officially diagnosed, but don't plan to do a gluten challenge after being off wheat for over 10 years.

Even if you don't have "true" Celiac, you could be gluten intolerant which seems to me pretty much the same thing and needs to be treated the same. And be open to the idea that more foods than gluten are bothering you.

[Mango04]

It is hard for me to tell what really hurts me because almost everything does from fruit to soups to candy and even eggs. Everything causes discomfort. I have tried a food journal which helped a little but no matter what I eat I ALWAYS have very excessive very uncomfortable gas.

If you do have celiac disease or gluten intolerance, that makes sense. Gluten can damage your intestines to the point where everything you eat can cause gas and discomfort. If you eliminate gluten for long enough to allow yourself to heal, certain foods that bothered you before might become tolerable. I hope you figure it out soon

[Curious121]

If you do have celiac disease or gluten intolerance, that makes sense. Gluten can damage your intestines to the point where everything you eat can cause gas and discomfort. If you eliminate gluten for long enough to allow yourself to heal, certain foods that bothered you before might become tolerable. I hope you figure it out soon

That is really what I needed to hear. I keep reading about people eating only certain things that cause problems but really I feel like everything is problematic - EVERYTHING. I know everyone says just omit gluten from my diet and see if that is the problem, but you are also telling me that it may take up to 6 months to feel better. I know there are false negatives but I am going to be tested anyway. After the test I will go gluten free, even after a negative result.

Again, thank you all for your input! You may have made my life better!

Oh another question if anyone can answer, if all of these doctors keep saying you have IBS why don't they test for Celiac Disease or gluten intolerance? Why is it so unknown in the doctor world? Why don't doctors recognize that most IBS symptoms may point to gluten intolerance?

[Looking for answers]

Just five years ago I could have written the exact same posting you did. I had EXACTLY the same symptoms. After reading this book "The Diet Cure" I realized that wheat is extremely had for most to digest, and, although it took me two years to weed it out entirely, it was the best decision I ever made. Gas . .. . gone. Stomach cramps .. .. gone. D when something doesn’t agree . . . gone. I also was losing my hair and had swollen glands all the time. Now I'm happy to report that I have no hazy thinking and I have a strong immune system. Whether you have celiac disease or not, most processed foods and wheat tear up your intestinal track, and you’ll notice a huge difference when you eliminate them.

Now, I do not have Celiac Disease (at least I've never been diagnosed) but I feel very much a part of this community because I'm gluten free. It's not easy at first to give up all your favorite foods, but after finding replacements, I promise you won't miss them long. The good news is that there are a ton of alternatives today.

Another thing to think about is giving up all processed foods. I hardly eat any processed foods, I don't eat dairy, and I limit my sugar as much as possible. I also take enzymes every day that have helped greatly to help heal my intestines.

I suggest reading "The Diet Cure." The book will help you eliminate problem foods by offering supplements you take while you go through cravings or "withdrawals."

Hope this helps. I really wish you the best of luck, and I recommend using the site for support—people are wonderful here!

Leslie