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My Story- Can Someone Help Me?


Charlee22

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Charlee22 Newbie

Hello All,

I'm new to this.. but I was hoping to get some answers. I am a 22 year old 115lb female who has been experiencing some rough Symptoms over the last 5 months. I should begin by saying over the past 2 years I did have a few bouts of constipation and upset stomachs- but nothing that caused too much pain and discomfort- and it also went away fairly quickly. But recently my symptoms have spun out of control. It began 5 months ago when I woke up and had massive cramps and diarrhea- which continued to last all day (which has never happened to me before) Now the night before i went out for dinner (sandwich and fries) so i assumed it just didnt sit with me right. From that day on my symptoms have been non-stop. I have 24 hour nausea, lingering migraines, fatigue, very bad bloating and intestinal gas, frequent bowel movements that seem to look different everyday, night terrors, night sweats, nausea that usually wakes me up- although i have only vomited 3 times since this has started- it usually results in a bowel movement of some sort- only once I go I never feel better. I also have your basic GERD symptoms. I have also developed itchy elbows with tiny bumps but they do not look as severe as images i have seen of Dermatitis herpetiformis.

I have tried to keep a diary of foods but nothing adds up- i feel sick every day with stomach and lower abdominal discomfort as my biggest symptoms.

I did do the celiac blood test and my results were inconclusive- and my doctor didnt really explain the results- she just referred me to a specialist. I did hear her say I have very elevated IgG levels-I am now scheduled for a biopsy soon.

The only thing that makes me believe its not celiac is that I have no lost much weight since this started- only 8 lbs in the last 5 months- but that could be that I often skip dinner because by time i'm done suffering through breakfast and lunch i'm spent. I also dont feel as though I have an immediate reaction to gluten(if its even gluten at all)- it usually begins a few hours after eating and lasts forever. I have bad days and Ok days... but never good.

This is effecting my quality of life and I am not the happy bubbly person i used to me. I want to cry everyday.

Does this story seem similar to anyone else? I know i will have answers soon- Im just nervous that my doctor will write me off as having IBS- and I just feel like there is more to it. I have never felt this crappy in my life- and it came out of NOWHERE. (im not a stressed person I should also note)

I will also add that I have sever asthma and have since the 5th grade.

My mother suffers from RA

and I was told when i was very little my bowel movements were so large and it hurt me so bad that i would have to hold my parents hand when going the bathroom(but that cleared up as i got older)

Any insight would be great...


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mushroom Proficient
Hello All,

I'm new to this.. but I was hoping to get some answers. I am a 22 year old 115lb female who has been experiencing some rough Symptoms over the last 5 months. I should begin by saying over the past 2 years I did have a few bouts of constipation and upset stomachs- but nothing that caused too much pain and discomfort- and it also went away fairly quickly. But recently my symptoms have spun out of control. It began 5 months ago when I woke up and had massive cramps and diarrhea- which continued to last all day (which has never happened to me before) Now the night before i went out for dinner (sandwich and fries) so i assumed it just didnt sit with me right. From that day on my symptoms have been non-stop. I have 24 hour nausea, lingering migraines, fatigue, very bad bloating and intestinal gas, frequent bowel movements that seem to look different everyday, night terrors, night sweats, nausea that usually wakes me up- although i have only vomited 3 times since this has started- it usually results in a bowel movement of some sort- only once I go I never feel better. I also have your basic GERD symptoms. I have also developed itchy elbows with tiny bumps but they do not look as severe as images i have seen of Dermatitis herpetiformis.

I have tried to keep a diary of foods but nothing adds up- i feel sick every day with stomach and lower abdominal discomfort as my biggest symptoms.

I did do the celiac blood test and my results were inconclusive- and my doctor didnt really explain the results- she just referred me to a specialist. I did hear her say I have very elevated IgG levels-I am now scheduled for a biopsy soon.

The only thing that makes me believe its not celiac is that I have no lost much weight since this started- only 8 lbs in the last 5 months- but that could be that I often skip dinner because by time i'm done suffering through breakfast and lunch i'm spent. I also dont feel as though I have an immediate reaction to gluten(if its even gluten at all)- it usually begins a few hours after eating and lasts forever. I have bad days and Ok days... but never good.

This is effecting my quality of life and I am not the happy bubbly person i used to me. I want to cry everyday.

Does this story seem similar to anyone else? I know i will have answers soon- Im just nervous that my doctor will write me off as having IBS- and I just feel like there is more to it. I have never felt this crappy in my life- and it came out of NOWHERE. (im not a stressed person I should also note)

I will also add that I have sever asthma and have since the 5th grade.

My mother suffers from RA

and I was told when i was very little my bowel movements were so large and it hurt me so bad that i would have to hold my parents hand when going the bathroom(but that cleared up as i got older)

Any insight would be great...

Hi Charlee, and welcome to the forum.

Your symptoms are certainly compatible with celiac, as is your elevated IgG result. Your biopsy may or may not be positive; make sure they take at least five samples, and then it depends on the experience of the gastroenterologist in recognizing celiac areas, and just plain luck also if the damage is minor, that they biopsy a damaged area. There are many false negative biopsies.

Contrary to what many believe, weight loss is not one of the criterion symptoms for celiac. A lot of us gain weight because our bodies are desperately trying to glean the necessary nutrients that we are not absorbing because of our leaky gut.

And do not accept IBS as a diagnosis; that is merely a description of symptoms. You know your bowel is irritable; you want to know why, suddenly.

Good luck with your biopsy procedure and I hope you get the answers you want.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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    • Scott Adams
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