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Celiac Disease?

gottarun96

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gottarun96 Newbie
gottarun96
Posted

I am questioning if I have celiac disease. Does this sound similiar. I poop MANY times per day. It is by far the worst when I first wake up nut occurs through out the day. Many times I could not wait longer than a couple minutes to go. When I do go it is long and skinny and tan. Sometimes there is something floating in the water. It looks like mucus maybe? I am bloated a lot and I have a lot of gass. I do not know if this is related but I have a red rash on my legs.

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eatmeat4good Enthusiast
eatmeat4good
Posted

The rash, if it is related, would be called Dermatitis Herpetiformis, the skin form of Celiac. Does it itch or burn? Is it worse at night? Does it get worse after eating gluten or salty food?

The other symptoms you have are also consistent with Celiac.

Are you thinking of getting tested?

If so, you need to keep eating gluten...if not you can do the elimination of gluten and see if your symptoms go away.

gottarun96 Newbie
gottarun96
Posted
  • Author

The rash is pretty constant. It doesn't really itch.

Is there a reason to get tested? If I eliminate gluten and symptoms go away is there anything the Doctor will do besides say I have celiac disease?

MitziG Enthusiast
MitziG
Posted

It is important to know if you have celiac disease. You may be gluten sensitive instead, meaning gluten makes you sick, but you do not have the auto-immune process of celiac disease going on. If you go gluten free, and feel better, you will stick with the diet awhile. But it is a very hard diet. Eventually, you will cheat.

If you have celiac, you can not ever cheat. Even small amounts of gluten can have damaging effects long term, some of them are life threatening and will not be noticeable until it is too late.

If you have celiac, it is genetic, and the rest of your family needs to be tested as well.

If you have celiac, you must be 100% gluten free, for the REST OF YOUR LIFE. It isn't something one will commit to without knowing for sure.

Once you go gluten free, you can not be tested without doing a "gluten challenge" which for most people involves several months of eating large amounts of gluten which is not as much fun as it sounds. If you are even sensitive to gluten, once you quit eating it, your sensitivity will likely increase- meaning eating even a little gluten will make you very sick. So the idea of making yourself very, very sick for the sake of being tested becomes difficult.

Many on this board didn't think testing was a big deal, didn't think they needed to know, in the beginning. As time goes on, and they aren't sure if gluten is their issue, or if it is the ONLY issue, they want to know. And then they have to do a miserable challengw.

Take my advice. Get tested asap. Do not go gluten free until all tests are done. If you have celiac, then you know. If your tests are negative, THEN try a gluten frree diet anyway. Gluten sensitivity can NOT be tested for, that is something you can only find out by experimenting.

Your symptoms sound very much like they could be caused by gluten, whether you have celiac disease or not.

kittty Contributor
kittty
Posted

I am questioning if I have celiac disease. Does this sound similiar. I poop MANY times per day. It is by far the worst when I first wake up nut occurs through out the day. Many times I could not wait longer than a couple minutes to go. When I do go it is long and skinny and tan. Sometimes there is something floating in the water. It looks like mucus maybe? I am bloated a lot and I have a lot of gass. I do not know if this is related but I have a red rash on my legs.

I didn't have the rash, but your poop habits sound like mine were for a couple of years. Later on it turned into diarrhea and ONLY diarrhea, several times per day, for about a year until I stopped eating gluten. It cleared up quite quickly after that.

Getting tested is up to you. I had given up on doctors who could provide no relief after years of medical issues, so I just started eliminating food groups one at a time until I found my answer. By that time I was already off the gluten, and couldn't bare the thought of feeling ill, missing work and putting my job at risk, being anxious, and running to the bathroom all over again just to get medical confirmation.

bartfull Rising Star
bartfull
Posted

The rash could be excema or psoriasis and I am convinced that they are both caused by food. My psoriasis has cleared up completely after 14 months gluten-free. I'm sure it would have gone away sooner but I developed sensitivities to other foods as well and one of them was corn which is almost impossible to avoid completely. But now that my gut has finally healed I have been able to add corn (and potatoes) back to my diet. My insomnia, brain fog, digestive issues, psoriasis, swelling ankles and feet, snoring, and heart palpitations have all gone away. My energy level has increased too.

And you have no idea what it has done for my mood! I was pretty grumpy for a while there, but now I wake up smiling and the little things don't set me off anymore. I feel like a new person.

I hope it goes as well for you. :)

gottarun96 Newbie
gottarun96
Posted
  • Author

So how do they test you? If iit is an intolerance nothing will show up? Does it sound like an intolerance if the test shows up negative?

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    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
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      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

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    • Scott Adams
      I think I am gluten intolerant

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      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
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