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No Prior Symptoms -- Intense Dehydration?


newbaker

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newbaker Newbie

I got a diagnosis of celiac disease a few weeks ago. I keep seeing people say that they had GI symptoms for a long time before they were diagnosed, but I didn't have much warning. I'm wondering if anybody has had a similar experience. I'm a bit surprised at the diagnosis, but am trying to follow the gluten-free diet which has been helping so far (about two weeks now). I'm also hoping people with more experience might offer me answers.

My biggest question is about celiac disease coming on very quickly. Until a few months ago I wouldn't have said I had any GI issues unless it was correlated to a large meal at an iffy place. It took days to go from no problems to severe dehydration for no reason I can find -- ended up in the ER with an IV although I'd been drinking 16+ big glasses of water every day that week. Even with the IV fluids, and with eating more than usual that week, I'd had lost over 15% of my body weight within 3 days. I think a lot of how ill I've been since then was made worse by that episode, so I'm worried that something this bad will happen again -- so I'm wondering if anybody has had similar experiences and what's happened since then? How long has it generally taken people not to need to be too worried about dehydration?

Since some of the blood tests were done while I was in hospital, I'm not sure yet which ones were showing things that led them to believe it was celiac disease. I know that a bunch of blood tests were done, and an MRI showed something about not absorbing water, but I see a lot of people here mention that doing an endoscopy is necessary. Since I've already stopped eating gluten will doing one now give any more information than the blood tests and MRI? Has anybody found benefits down the road to having done an endoscopy?


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Takala Enthusiast

If you were already diagnosed, you don't really need an endoscopy (which looks at your small intestine for damage to the lining of it) unless your doctor recommends it to aid in further diagnosis of what could be additional issues.

The majority of people with celiac disease are still undiagnosed because of the prevalent myth that one must have G.I. issues and weight loss and wasting as the primary symptoms, when in reality celiac can cause many different symptoms and auto immune problems, even weight gain because of thyroid problems, and severe weight loss is more likely the acute end phase. In our society, with our eating habits frequently causing "heartburn" it is considered almost normal to be having to use an acid blocker after a heavy meal, or gobble down "Tums," but doctors do not realize that a lot of heartburn could be a sign of celiac and celiac caused acid reflux disease.

Testing is best done while still eating gluten. In your situation, continuing to eat gluten might be so dangerous, that the doctors thought that what tests they have done are sufficient, especially if you are already responding to a gluten free diet.

As long as you continue to eat gluten free, drink enough water, and eat carefully, you should be okay with the dehydration. I have to be careful with it, but it is not because I am having any GI issues, but because I live in a part of the country where a high of 90

1desperateladysaved Proficient

Extreme thirst is a symptom which I have had. I think it is related to Celiac. I now think that I am dehydrating during attacks. Symptoms have included bright yellow to nearly orange urine, and dry mouth. I also don't sweat or have tears at the worst of these times. :(

I was recently cautioned by my doctors to stay out of the hot sun. I was swollen and had a rash. They didn't exactly explain to me why.

I think I have been reading that the small intestine has difficulty absorbing water. That being the case I am not sure if drinking more will solve the problem.

I hope you will heal up enough to maintain your fluid level the normal way.

DT

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      Thanks for the reply. 
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      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
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