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Help -- Symptons Worsening


Mooskie

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Mooskie Newbie

Hello, I'm reaching out to see if anyone on here has any recommendations. I'm a 27-yr old female, 130 lbs. The only health issues I've had my whole life were hay fever and some mild digestion problems. BUT, for the past year and a half, I have had extreme digestive issues that seem to be getting worse. I am either running to bathroom 7 times a day or constipated, bloated and unbearably uncomfortable. At night, I have terrible gas, sometimes it doesn't stink, but most of the time it is very foul. My bathroom problems have become the only thing that I can think about. I can't seem to pinpoint exactly what foods are triggering the constipation and diarrhea, because it varies so much!! Also, a few months ago, for approximately one week, every time I ate I would break out in an extreme rash -- I had hives ALL OVER my body, including my face, the palms of hands and the bottom of my feet. After a few days, my husband suggested I avoid wheat products...I did...and the rash finally stopped appearing. The breakout has not happened since, but I've been eating gluten. However, I now have very small bumps all over my face and chest. My complexion used to be crystal clear, now the bumps will not go away!! Also, no matter how much sleep I get, it's never enough, I'm always wanting to nap or lay down and do nothing, I have dark circles under my eyes that I never used to have, and I miscarried at 7 weeks about a year and a half ago.

But my biggest complaint is my digestive and skin issues.

I'm meeting with an allergist this week, and I plan to ask him to refer me to a gastroenterologist. There are so many tests...can anyone suggest anything specific?? Does it sound like Celiac or maybe just IBS? Please, any and all suggestions/thoughts are welcome. Thank you thank you thank you!!


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burdee Enthusiast

Hello, I'm reaching out to see if anyone on here has any recommendations. I'm a 27-yr old female, 130 lbs. The only health issues I've had my whole life were hay fever and some mild digestion problems. BUT, for the past year and a half, I have had extreme digestive issues that seem to be getting worse. I am either running to bathroom 7 times a day or constipated, bloated and unbearably uncomfortable. At night, I have terrible gas, sometimes it doesn't stink, but most of the time it is very foul. My bathroom problems have become the only thing that I can think about. I can't seem to pinpoint exactly what foods are triggering the constipation and diarrhea, because it varies so much!! Also, a few months ago, for approximately one week, every time I ate I would break out in an extreme rash -- I had hives ALL OVER my body, including my face, the palms of hands and the bottom of my feet. After a few days, my husband suggested I avoid wheat products...I did...and the rash finally stopped appearing. The breakout has not happened since, but I've been eating gluten. However, I now have very small bumps all over my face and chest. My complexion used to be crystal clear, now the bumps will not go away!! Also, no matter how much sleep I get, it's never enough, I'm always wanting to nap or lay down and do nothing, I have dark circles under my eyes that I never used to have, and I miscarried at 7 weeks about a year and a half ago.

But my biggest complaint is my digestive and skin issues.

I'm meeting with an allergist this week, and I plan to ask him to refer me to a gastroenterologist. There are so many tests...can anyone suggest anything specific?? Does it sound like Celiac or maybe just IBS? Please, any and all suggestions/thoughts are welcome. Thank you thank you thank you!!

IBS is not a diseae. It's merely a label doctors give to symptoms they can't explain. Most IBS symptoms are caused by either celiac disease, food allergies, gastrointestinal infections from bacteria, parasites and/or fungus (like candida).

If you request celiac disease blood tests, you'll need to keep eating gluten before the test. Those tests depend on you being sick enough that the gluten antibodies are in your blood. You might also want to request thyroid hormone tests. Fatigue, dark circles and fertility issues are often caused by hypothyroidim. Hashimoto's thyroiditis is the most common kind of hypothyroidism. Hashimoto's is highly correlated with celiac and/or gluten intolerance. So you might have Hasimoto's as well as celiac disease.

GFinDC Veteran

Hi,

There is a skin condition associated with celiac disease called dermatitis herpetiformis or DH for short. There is a section of the site dedicated to DH.. That might be a good place to do some reading. DH is a rash that people with celiac disease get. One way to diagnose celiac disease is by testing a biopsy of the skin near a lesion for antibodies.

Your symptoms sound like you are turning into a munchkin or you have celiac disease or maybe gluten intolerance. All of those are treatable with the gluten-free diet except for the munchkin thing. For that one we will have to get creative. Hopefully it is not that. :)

Mooskie Newbie

Hi,

There is a skin condition associated with celiac disease called dermatitis herpetiformis or DH for short. There is a section of the site dedicated to DH.. That might be a good place to do some reading. DH is a rash that people with celiac disease get. One way to diagnose celiac disease is by testing a biopsy of the skin near a lesion for antibodies.

Your symptoms sound like you are turning into a munchkin or you have celiac disease or maybe gluten intolerance. All of those are treatable with the gluten-free diet except for the munchkin thing. For that one we will have to get creative. Hopefully it is not that. :)

Hi, thanks for your response. I'm not exactly sure what the munchkin reference means but anyway...

One more quick question. I'm seeing an allergist on Friday morning and I am going to ask that he do the blood tests for celiac. I've been eating gluten, but do you know what the chances are of getting a false negative? I'm worried that the test will be negative and the docs will send me away. Should I also be referred to a gastroenterologist to have an endoscopy done?

GFinDC Veteran

Hi, thanks for your response. I'm not exactly sure what the munchkin reference means but anyway...

One more quick question. I'm seeing an allergist on Friday morning and I am going to ask that he do the blood tests for celiac. I've been eating gluten, but do you know what the chances are of getting a false negative? I'm worried that the test will be negative and the docs will send me away. Should I also be referred to a gastroenterologist to have an endoscopy done?

Sorry, munchkin is just a joke. Silly. The testing is not perfect in the best of times. There are a couple of thread links on testing in the FAQ. There are different tests and they have different accuracy rates. Some are up to 71% accurate for negative results. That means they have a 29% error rate. Others are more reliable. Positive results are more reliable than negative results.

The usual advice is you should be eating the equivalent of 3 to 4 slices of wheat bread a day for 3 months before testing. Eating gluten light is not a good idea before testing.

celiac FAQ

An endoscopy is optional IMHO. But many doctors want the endoscopy done before they will diagnose celiac disease. If you need a disagnosis they will probably want to do an endoscopy. Some doctors will diagnose based on blood antibodies and reaction to the gluten-free diet though.

Having celiac disease on your medical records may not be a helpful thing for insurance purposes. But it might help with things like meal programs at a college or a school.

Generally though you are better off cooking your own meals and not eating food someone else prepared.

addis001 Apprentice

I would also test for Corn Allergy... Both of my family members have Celiac with Corn allergies.. I haven't been tested for corn yet but I'm going to ask for a referral to an allergist.

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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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