What Do You Think?

[menwall]

Here's my story (I'm currently 17). Last summer I started having bouts of diarrhea and I tried the usual off-the-counter remedies, main one being Immodium. Ever since then Immodium HAS helped stop these attacks but maybe a day or two later (after eating normally) I would get another.

I visited my doctors who took a blood test and stool sample. Both showed nothing, though I doubt they checked for gluten intolerance. They referred me to the hospital were the waiting time is 3-4 MONTHS! About 2 months of that has now passed and I'm still getting these random attacks along with abdominal pain.

I went to see my local doctor again last week and she said she really couldn't do anything but to try some tablets for the pain and keep taking the Immodium. I've had to take days off school and sacrafice social nights out because of my guts.

Although the Doctor did suggest in a passive comment that it MAY be Celiac/Coleaic Disease. I have gone on a gluten-free diet for the past 4 days and feel maybe a slight bit better. At least I haven't had any attacks and my stools are normal but pale.

Now my routine is this. When I get up in the morning I have a knife-like feeling in my gut, as if it's being proded! I tend to have alot of gas (maybe this is because of changing my diet to gluten-free) but maybe an hour or two after I get up and pass some gas I feel quite good.

I was thinking maybe I do have celiac disease...here are my symptoms...take what you will!

Abdominal Pain

Diarrhea (not switching to constipation though, just normal)

Pale stools

Sometimes fatigue

And last time I went to the Dentists she told me I was losing tooth enamel, which my previous Dentist never mentioned (I read this was a symptom of celiac disease on a website.)

Sometimes I feel my bowels are not empty even after using the loo.

Mucus in stools ,especially when I have Diarrhea bouts

Weight loss (lost 2 1/2 stone over a few weeks)

Thanks in advance for your views

Colin

[jerseyangel]

Welcome Colin! From the sound of your many symptoms, Celiac is a definate possibility. A simple blood test and stool sample can't diagnose Celiac, you need a full Celiac (blood) Panel and possibly a biopsy of your small intestine to see if there is any damage. If your appointment is coming up and you want to be tested, don't stop eating gluten because that can give a false negative on both tests. Sorry to hear that you've not been well--good luck at the Dr. and let us know how it goes. Feel free to post anytime with any questions

[mightymorg]

Hi! I'm fairly new to this site also, but it is so helpful and I'm sure you'll find the same! It does sound like you do have some symptoms for celiac disease...I just got my blood tested last week, so I'm waiting for my own results. I do understand, though, your frusteration with doctors...MANY of us here do!

[cornbread]

Hi Colin

If you want a quicker answer, you could do the Enterolab stool and gene test. They are based in Texas, but they do testing for people overseas - in fact I have just ordered a few tests for my relatives in the UK. They send you the kit and you ship it back via FedEx's "biological specimen" service, then they email you the results within 3 weeks. Check out their site: www.enterolab.com.

Myself and both of my parents used them and we're all now gluten-free. We don't know for 100% sure if we're Celiacs or 'just' gluten intolerant, but having the gene test too gives you some insight into which it is (the lab report explains all this). But the results show you if you're reacting to gluten, and from that the Dr. at the lab will advise you on what to do (go gluten-free or not, basically).

It's pretty affordable too.

Good luck!

Cornbread

[celiac3270]

Hey Colin,

I'm almost 15--diagnosed nearly 2 years ago.

First, your doctor can't really CHECK for gluten intolerance because you can't diagnose someone with gluten intolerance through any type of test. The doctor would pass that judgment based on your symptoms, perhaps response to gluten-free diet, etc.

With regards to symptoms, diarrhea is among the top symptoms (the most prevalent symptom being fatigue, which you also have). Gas is very common, as are pale stools and abdominal pain (probably due to the gas). The mucus also sounds celiac. Finally, they are studying the effects of celiac dentally--but dental defects, such as wearing of the enamel or frequent cavities are also common traits of celiacs.

That said, your symptoms sound VERY much like those of a celiac. If you are celiac, it is really important for you to be on a gluten-free diet and avoid potential long-term problems. Untreated, undiagnosed celiacs can have problems later in life such as diabetes, cancer (intestinal-related), anemia, and other deficiencies, etc. I think you're definitely on the right track with starting the diet. There are plenty of people on this board who do not have a formal diagnosis, but noticed a phenomenal difference when they changed to gluten-free. Any increased gas you've noticed is probably due to the diet change, but that, too, will pass. Just make sure you're eliminating ALL gluten, because a few crumbs is just as bad as a whole pizza. It's excellent that you're taking this into your own hands since the doctors aren't being that helpful. Feel free to ask any questions here re: diet, symptoms, etc.

-celiac3270

[jajus100]

I'm in the same boat...waiting to get in with specialists. You should be able to go back to your doctor and tell them you want the celiac panel blood work done, though. ANY doctor can order this and it is an easy test for them to do. You should get results back from the lab in a short amount of time. Be demanding... You are the customer!

[menwall]

Thanks for all your replys and support!

I have organised for a woman to come over to my house in 4 or so days to check me for any food allergies I may have. Hopefully she will test for gluten and will be able to indentify if I am allergic to it or not. My 4 month wait for the hospital is just a 'routine' appointment so they won't be doing a biopsy! I have now been gluten-free for 5 days and I do feel alot better already!

I'll keep you all updated as to how my allergy testing goes!

Colin

[darlindeb25]

Colin--a celiac is not allergy to gluten, we are intolerant--an allergist probably will not find this. I know this sounds very confusing and it is somewhat. Just as a dietician usually has no idea how to teach us about gluten. Read everything you can--eventually you will understand so much more. I wish you luck in finding out what is wrong with you--it certainly sounds like celiacs or a gluten intolerance. Deb

[celiac3270]

Yes--you could be celiac and not have allergies to wheat, rye, barley, etc. Two completely different things....

[cornbread]

Just to back up what the others said - I tested positive for gluten intolerance, but negative for a gluten allergy. They are totally different. You need to either order the celiac blood panel from your doctor or the stool test from enterolab (and the latter is WAY more sensitive, so I would go with that).

[menwall]

As an update I went and got a private appointment with a gastronologist and he took a blood samplea and a colonoscopy. He said he didn't think it was celiac disease or anything gluten related and I am now waiting for the results of my blood test which he said he would test for gluten intolerance with.

He also said basically if I'm not celiac, I have IBS

Oh the joys of my body

[VydorScope]

As an update I went and got a private appointment with a gastronologist and he took a blood samplea and a colonoscopy. He said he didn't think it was celiac disease or anything gluten related and I am now waiting for the results of my blood test which he said he would test for gluten intolerance with.

He also said basically if I'm not celiac, I have IBS

Oh the joys of my body

OKay, you walking down the road that many ppl here have. I want to first state that I am NOT A DOCTOR AND DO NOT HAVE ANY MEDICAL DEGREES/ ETC. I am just a man with celiac disease who has a son with celiac disease.

My suggestion is that you ask you GI doc (or pirmary care) to do the full celiac disease panel RIGHT NOW, before you have been gluten-free too long. If you can not get an apptoment with in the next 24 hours, you will have to go back eating gluten until they draw blood, or the will tests not be vaild.

Once you have taken the blood test, go 100% comptetely gluten-free in your diet. Stick to it with all you got, and if you are celiac disease you will not see imedate results, but over a period of time you will start getting "better". Your symptons will decrease, and you will start feeling better.

A colonscopy is a good idea to make sure of OTHER things, but your not goning to get any info about celiac disease from it.

Its impoart that you get the full panel of celiac disease blood tests, if you just get the 1 test, the so called "screening" one, IgA, you have a good chance at a false negative. In the end though, most agree the diet is more telling then any of the current test.

Good luck, and know that you can always ask questions here!

[Rachel--24]

As an update I went and got a private appointment with a gastronologist and he took a blood samplea and a colonoscopy. He said he didn't think it was celiac disease or anything gluten related and I am now waiting for the results of my blood test which he said he would test for gluten intolerance with.

He also said basically if I'm not celiac, I have IBS

Oh the joys of my body

Were you on the gluten-free diet when he tested you? In your earlier post you said you were trying the diet...if you were not eating gluten regularly for weeks before the test it can result in a false negative. Eating gluten for a few days or for a week before testing is not sufficient. It takes awhile for the antibodies to appear in the blood.

[Rusla]

Well, many years ago I tested postive to wheat allergies. Then I tested positive to gluten intolerance, and even though the dermatologist didn't think it was, I tested positive for DH and Celiac. But then the Dermatologist was going by what everyone thinks a Celiac should look like. Many, many doctors don't have a clue and the blood test is not always accurate.