Hi, I'm New And What Does A Celiac Stool Smell Like?

[Tanzanite]

Hi everyone,

I've just registered. I'm almost 30yrs old, female and living in the UK.

I have numerous health problems: Ehlers-Danlos type 3 (EDS), Postural Orthostatic Tachycardia syndrome (POTS) and Dysautonomia.

I also have IBS since age 11, gastritis, High Thyroid antibodies, Raynauds, Pustular Psoriasis, Lactose intolerant and it now seems I may have Sjogren's syndrome.

If all that wasn't enough I have been absolutely exhausted for 18mths, I keep getting stomach pains and terrible gas, particularly after eating (within an hour or so) stomach upsets with pale brown/very yellow stools that often float and seem 'fluffy'.

I don't have a great deal of gluten in my diet anyway but a recent home test I did for anti transglutaminase IGA with the new Biocard test (

[nora-n]

Hi, I am in europe and here we need an official diagnosis. This os only done by biopsies of the small intestine, looking for damage to the villi and some more signs in the biopsy slides.

Now, the home test may be weak or strong, but any kind of positive test result is definitely positive.

You need to talk to a doctor as soon as possible. Do get in contact with the celiac organisation because you will learn more about your rights and what pitfalls to avoid.

I never had a positive biopsy nor blood test, and was very low carb when I noticed I did not toerate gluten and milk. I did not know I had to eat at lest 30 g pure gluten per kg for at least 6 weeks, better three months before the tests. I went to the doctor too soon and they did not suggesting re-testing and continue on gluten, like they should. I am totally gluten-free now as I have neuro symptoms on gluten. My daughter has an official diagnosis.

Another thing is that all EDS patients have lots of digestive issues.

And, that gut biopsies are not redommended.

That is because of the risk of complications, namely bleedings and damage otherwise. Maybe capsule endoscopy would be more suitable for EDS? Or a camera that takes pictures all the way through? I do not know. I know of someone who paid privately for this kind of exam and then got a diagnosis.

On teh other hand, if you got any kind of positive test result with the home test, chances are that your gut is so damaged that you will get a positive biopsy result right away.

definitely do nt go gluten-free now, advice from Europe. The US people might tell you otherwise but their helth system is quite different. They are often punished economically if they have an official diagnosis, by the way. Here we get money.

nora

[par18]

Hi,

Basically to answer your question, "loose", "floating" and "foul-smelling". You say you are "mostly" gluten-free. If your problem is Celiac I don't think that will get it done. This idea of going mostly gluten-free or "gluten lite" is one of the worst things one can do. It may make diagnosing Celiac (or anything else) impossible. If you choose the diet approach you have to eliminate gluten completely to see if any of your numerous health issues either get better or go away completely. What I am saying is that you must try to do one thing at a time. Because Celiac presents itself in so many ways symptom-wise, it is possible to go on the diet and see a dramatic improvement in some or all areas. If you do this and only a few remain then they can be addressed as separate issues.

If you are sure you understand what going 100% gluten-free means and are willing and able to give it an honest effort then that is certainly an option at this point.

Good luck.

Tom

[Katydid]

I would truly love to see you go totally gluten free and see what happens. What could it hurt? You have described a classic "celiac stool"

I have a dear friend who was nearly bedfast when she asked her doctor for a celiac blood test. In his arrogance, the doctor refused stating that he was the doctor and he was treating her conditions. As a last resort, my friend decided to take it upon herself to go gluten free. What AMAZING results. Today, my friend is a vibrant healthy woman, super active and attends college. She was truly amazed to find most of her symptoms were totally celiac related.

[Tanzanite]

I should have added, I'm not on an intentional gluten lite diet. Just my normal diet that's been the same for about 10yrs just happens to not have loads of gluten in it. All the sauces, soups etc I use just happen to be gluten free, the only thing I eat with gluten in is 1 maybe 2 pieces of bread a day and about 4 spoonfuls of Cheerios for breakfast and about 6 spoonfuls of Readybrek (instant porridge) in the evening. I'm guessing this isn't enough for a strong positive.

I had the Anti-Gliadin test too (a private test) but that was negative. I know it's only about 70% accurate and isn't really used anymore. That result was IGA 0.3 Normal is 0-0.4. IGG was 2.9, normal is 0-10. I read it should be a negative number or as close to 0 as possible to be negative so the IGA one is almost positive and probably is if the test is that inaccurate.

Two conflicting answers re: should I just go ahead with the gluten-free diet lol

Absolutely right about the EDS and having endoscopys/biopsys, there's a much higher risk of perforation of the gut. The only place that does video capsule ones are too far away for me.

[nora-n]

If you had the same home test as we have in Norway, it was a Ttg-2 test invented by Matti M

[Tanzanite]

This is the test I used Open Original Shared Link It is made in Finland by Ani Biotech.

So you're meant to eat 0.3g per each kg of your body weight if I read that correctly? In that case I'm probably eating around just under half of that. There's no way I could eat twice the amount of gluten I'm eating now! Last week I ate one croissant (which I never normally eat) in addition to my usual amount of gluten and I suffered in a big way for several days.

[nora-n]

Yes, this is the same test as here, and it says on teh pdf that M

[aikiducky]

I'm in Europe too, in Holland that is. Welcome on the forum.

I do think it would be a good idea to at least call your doctor first. Would it be difficult for you to get an appointment quickly? If the home test was positive even with your current diet then I would think there's a good chance a blood test might be positive too. Frankly I wouldn't start eating more gluten though, it sounds lie you really don't need to get any sicker!

I also think that with your additional health problems you should at least discuss the possibility of getting a diagnosis with just blood tests. It's not impossible, it just depends on the doctor.

I'm gluten free without an official diagnosis, but I'm otherwise healthy and don't need any extra monitoring. If I wasn't I'd be more eager to seek an official diagnosis before going gluten free, because there are things things you should be monitored for, like that your vitamin levels are/return to normal for example.

BUT after all is said and done, if you can't get your doctor to cooperate, I would eventually try the diet anyway. It might help and it is a healthy diet.

Good luck and please keep us posted!

Pauliina

[Tanzanite]

Thanks everyone.

I will contacting my Dr about it. An endoscopy isn't an option for me. If they want to do the endomysial blood test then fine but not sure whether it will show up because I really don't want to eat any more than I do, already feel ill enough!

I expect they'll do other routine bloods too, such as blood count etc.

Just have to see what they say. In the end I know I react to gluten, and whether they'll accept the diagnosis just on blood test(s) or not doesn't really matter as I'll be going gluten free whether they accept it on blood tests or not. I know my body!

Thanks again. I'll try and update with any news to how things progress.