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Help -- Symptons Worsening

Mooskie

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Mooskie Newbie
Mooskie
Posted

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
burdee
Posted

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
GFinDC
Posted

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
Mooskie
Posted
  • Author

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
GFinDC
Posted

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
addis001
Posted

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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    • Scott Adams
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      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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