Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

Do I Have Cd?

7 posts in this topic


I stumbled upon these forums from Google. I have been wanting to hear some input from people with celiac disease, and I am very happy to have found these forums.

I a 17 years old (Male) who thinks that he might have celiac disease.

All throughout my life, since I can remember at age 4, I have never always had normal stools.

At age 12 I was diagnosed with lactose intolerance. Thankfully, after cutting away all diary I was no longer having problems. Probably around September 2003 I could no longer have any diary at all, before I used to take lactaid pills, now even those do not work. Then, probably since October 2003 I have had various types of stools; some diarrhea, some constipation, some normal. I was still able to function and pulled through it. In February I just got tired of it, and that is when my mother suggested taking Metamucil and that helped relieve the diarrhea. Another thing to note: From Oct 03 to today I have probably never had consistent stools every day, it was more like every two days. I was used to these symptoms by now (due to my lactose intolerance), also I was never alarmed or felt like something was wrong because it is supposed to be a family thing. Probably both sides of my family have had various gastrointestinal issues, my dad's side of the family calls it "The Family Curse". Well I hate the curse!

Now in March I was really fed up with my guts, the metamucil stopped working and the diarrhea came back. Ever since then I have been trying to figure out what could be causing this trouble that I am having.

Here are my symptoms:




Random stomach/intestinal pain

Whenever I use the bathroom it feels like I still have to go, there is no "ahh now my pants fit better factor" :D

Unusually smelly farts/poop (sorry for putting it so literally)

Farting more than usual

My intestines feel like there are minor knife cuts all throughout them and for some reason they refuse to heal

Whenever I wake up in the morning I get the feeling from my guts that within two hours I will need to use the bathroom, I also usually have pain in my guts that goes away within 3 hrs.

Another thing to note: My symptoms that I am having now are a heck of a lot different then my lactose intolerance symptoms

Last week I started googling stuff, and some of my first results were websites related to Gluten. I saw the symptoms and they were exactly the same that I am having now! My nearest insurance certified doctor is over an hour away and I cannot travel in this condition, so just last week I visited my local doctor and without me asking any questions or suggesting what I might have he suggested that I might have a fructose or gluten problem. That further reassured my thoughts. My town is a commuter town, its biggest attraction is a movie theater, it is impossible for me to get a gastrointelolgist here, and the local doctor does not have the tools needed to perform accurate gluten/celiac disease tests.

Does anyone think I might have celiac disease?

I would like to go Gluten Free (even though many websites say not to do it until recommended by a doctor) and see if it helps.




Share this post

Link to post
Share on other sites

Ads by Google:

Hi Schnee,

I haven't been to my gastro yet either, but I finally made an appointment...If you're having trouble getting a doctor, you can order some tests yourself, but it does cost money. Many people here have done that same.

Dr. Fine is a board-certified, though somewhat controversial, gastroenterologist and researcher who can do labs on you with your stool without a doctor's referral. You can order the tests yourself. The complete stool panel is $349, though if you want to go cheaper, you could get the gluten sensitivity test, which will tell you your IgA Anti-gliadin level for $99 and the tissue transglutiminase test for $99. If both are positive, I'd say, go gluten free and monitor your symptoms. Some people think his tests are not reliable, other people swear by them. I had them done myself and it was painless and easy and I think he might be on to something because even tho' the usual tests arent' through the stool, a new study just came out on some italian researchers that are starting to do the same thing.

I just ordered this's called CDScan and it's a finger-prick blood test you can order yourself for $99. It also tests for tissue transglutiminase, but through the blood, which is one of the standard ways they test you when you get a Celiac panel of blood tests at the regular doctor. I haven't gotten my results yet, but there's a review of test process that another celiac posted on if youwant to see pictures and all that.

The "official" diagnosis of celiac disease is when they put a tube into your small intestine, and take a couple snips of tissue and examine them under a microscope for damage. However, some people feel they can "self-diagnose" by going gluten free themselves and monitoring for symptoms, or getting some of the tests I mentioned above, going gluten free, and monitoring for symptoms.

If you do get any tests, don't go off gluten yet. The tests are more accurate if you are eating gluten. If you do get to an "official" doctor for testing, don't go gluten free. Not yet at least. If you go gluten free and your symptoms abate, but then you want testing done, you'll have to go back on gluten for a number of weeks to get accurate results. Stinks, doesn't it.

Good luck in your quest!

Stay healthy,

Laura in CT


Share this post

Link to post
Share on other sites

You know Schnee, I just thought of another thing. Your local doctor should be able to help you out more. All your local doctor has to do is take some of your blood and then have it sent to a specialized celiac disease lab. I would think that just about any local doctor can draw your blood for testing???

Good labs for celiac disease testing are

Prometheus Labs

Specialty Labs

IMMCO Diagnostics

Mayo Clinic.

I know most of the labs will mail a collection kit and instructions to your doctor.

Hope this info helps.

--Laura in CT


Share this post

Link to post
Share on other sites


First off, you can't know for sure if you're Celiac unless you get the blood test or, preferably, the endocopy. If you're going to get tested for that, keep eating the regular stuff that you feel could be giving you all these symptoms. However, if you aren't going to get tested, there's nothing wrong with a gluten-free diet. If it relieves your symptoms, then it doesn't even matter if you're Celiac or not...the diet makes you feel better.

As for symptoms, some of those sound very familiar. My primary complaint was the horrible stomach cramps, often usually with vomiting, that gave me so much trouble and pain. Since first grade (I'm now 13), I had been sick ALL the time. In first grade, I would eat dinner, then feel really sick, run to the bathroom, throw up, and then feel better. Later, it became once every week, or so, I'd get sick and have a 24 hour bout with this. Other symptoms included: severe bloating, occasional diarrhea (sometimes formed stools, sometimes loose), and rather stinky gas/stools. I never experienced fatigue, personally, but realize that it's a common symptom in Celiacs. In addition, I have never been extremely puny, but in basketball games and other contact sports, it's easy for me to be pushed around.

If you choose to start the gluten-free diet without first testing, keep in mind that your symptoms won't go away immediately (if you indeed have Celiac). I've been on the diet for 13 weeks and though my symptoms aren't as bad (knock on wood), they aren't perfect, either. Anyway, if you try the gluten-free diet, be patient, give it a few months, and make sure that you are 100% gluten-free or you won't feel any different. I believe there is a good list on this website of ingredients that are/aren't gluten-free. It's not just wheat, barley, and rye: there are a lot of ingredients to check for in each product and you'll find yourself making a lot of phone calls (because natural/artificial flavors may or may not have gluten). In addition, if you choose to stray beyond the simple meats, potatoes, vegetables, and other things that you can buy in your grocery store, there'll be some added expense. Good luck.


Share this post

Link to post
Share on other sites

Hi Schnee,

It sounds like classic celiacs to me. <_<

If you do get tested, please understand that you have to presently be eating gluten for the blood test to come out positive.

If you decide to go gluten free (gluten-free) without the test, make sure everything is truly gluten-free.

You mentioned Meticmucil. I also take it, even though I have no more intestinal problems since going gluten-free. I take it for added intestinenal health. I use the regular formula because the sugar free kind has aspertame. One time I ran out and went to Target to get more. All they had in stock was the Target brand, so I bought it. For the next 6 weeks I kept feeling sick. Many of the same problems were coming back, like the numbness in my hands, extreme achiness, sleeplessness, and my stomach just not feeling right. It never accured to me to check the ingredients of the metimucil. I dont know why but for some reason one night I did. It was sugar free, had aspertame, and believe it or not, Maltodestrin containing gluten. :blink: obviously I stopped that night, and of course by the next day I felt fine.

Also be aware that foods that say "wheat free" or "no gluten added'" are not always gluten free. :(

I hope you start to feel better soon. Keep checking out this site for more information.



Share this post

Link to post
Share on other sites

The blood test proved negative for me when I was having the exact same symptoms as you. The blood test does not work well unless you already have significant damage to your body so much that it is indicated in your blood stream. I'm 18 and I just got tested this month by Enerolabs with a stool test and I am positive for Celiac. I have been on the diet for 4 weeks now and except for the occasional wheat contamination, I am feeling much better. Definitely go with a stool test. It is painless and you just mail it out.


Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
    • Hi Sunshine, There is a program called a 504 plan that some schools will follow if you get one approved.  It helps the school identify proper ways to deal with a child's particular needs.  Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it.  I suggest you talk to the school and ask them about it.  Tell them the situation with the kid and about the stress he would need to go through to get diagnosed.  They may be willing to work with you without a formal diagnosis.   I am not saying you absolutely have to have a 504 plan for him.  School districts vary and some may be more accommodating than others.  A 504 plan may give you certain rights, but I  am no expert on them. The gluten challenge is 12 weeks of eating gluten for blood tests.  The payback for being formally diagnosed is questionable IMHO.  Treatment is the same regardless, eating gluten-free for life.  One thing to be aware of is that celiac disease has a genetic factor.  So he got the gene from one of the parents.  Anyone else in the family could have celiac develop at some point.  So testing every couple years for all family members is a good idea. Welcome to the forum!
    • Thank you everyone. I appreciate all of the information and support.  I am feeling overwhelmed right now and it was really getting me down yesterday. I don't feel so hopeless now. 
    • Okay. I think I will start with an allergist and a dietitian. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member