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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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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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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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