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Guest scully

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Guest scully

Hi, everyone.

I don't know if I have celiac or not, but I am now 34 and sick to death of my GI issues. It has gotten to the point where I wish that they actually did entire GI transplants. I just want to get rid of everything from my esophagus to my colon and put someone else's in. :rolleyes: I will try very hard to make this as short as possible so not to waste your time.

2002-2004 --- gained 20 pounds, chronic constipation, horrid, foul-smelling gas (like a cross between a skunk and sausages--no kidding), abdominal distention, puffiness all over, cramping, incomplete evacuation of bowels.

2004---diagnosed with constipation-predominant IBS after inconclusive colonoscopy, only blood-tested for celiac at that point, tests came back negative. After changing diet, eliminating most dairy and processed food, and adding probiotic supplementation, lost 25 pounds and felt great.

2007--- Began having frequent chest pains. 2 ER visits, a chest x-ray, a stress test, an EKG, an ECG, a HIDA scan and finally an endoscopy later, diagnosed with both gallbladder disease and GERD. Had gallbladder removed. GERD symptoms persist despite treatment and further lifestyle/diet changes.

August 2008---- Still have GERD. However, bloating has returned, along with gross,disgusting gas, severe stomach distention, alternating and chronic diarrhea and constipation, incomplete bowel evacuation, inexplicably gained 7 pounds in ONE MONTH, some nausea, fatigue/anxiety, lower body (hips, thighs, lower belly) VERY puffy. Probiotics are NO LONGER HELPING, IBS diet no longer helping.

I should also mention that in addition to having severe allergies (on immunotherapy), I have always, up to this point, bruised VERY easily, and have had a red, raised, scabby, itching to the point of burning, bumpy rash around my elbows off and on for the last year or so. I had thought it was just "winter itch", but it got so bad last year that the skin got very dark purply-red and THICK and leathery. Moisturizers and corticosteroids did not help. Finally went away but left scarring. Continue to get this rash off and on, in varying degrees, even in summer. ONLY TODAY did I find out what dermatitis herpatiformis was.

As a closing note, I am scheduled for another endoscopy and small bowel biopsy on Monday.

Please tell me what the h*ll is going on. I am so irritable and stressed out from this. It's all I think about.

Thanks,

Jen.


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Jenny (AZ via TX) Enthusiast

Jen,

You may have DH. If you have the itchy bumps now, you can get the area next to them (not the actual bumps) tested for DH. If you have DH, you have celiac. (This is from the book "Living Gluten-Free for Dummies", p. 56.

Someone else with more knowledge will hopefully chime in here.

Please check the DH section of this forum.

climbmtwhitney Apprentice

Hi Jen,

I'm so very sorry all this is happening to you. I, too, have a long sorted medical history so I can relate. Definitely no fun, huh?

I am a recently diagnosed Celiac, so I'm no expert. Having said that, it sure sounds possible that you have Celiac or gluten intolerance from your symptoms.

For your biopsy on Monday....Do some reading up on it because they can be falsely negative just like the blood work. Make sure they take an adequate number of tissue samples from ALL parts of your small intestine.

Also, in regards to your rash.....Some people with Celiac disease get an itchy rash. The rash is usually on their back, butt, knees, and guess what.....elbows! It's called dermatitis herpetiformis. It can also be biopsied to test for Celiac.

Hang in there. Hopefully some answers are right around the corner. :)

Sonya

MinMin Newbie

Hi Jen,

I'm sorry to hear you have these issues. I too am going through the process of figuring out what's going on with my body. After extensive tests just like yours and the doctors not finding an obvious physical cause, I was just so exhausted and frustrated. After finding this forum, I've been given renewed hope as the symptoms match my problem completely. However testing, it does seem unlikely that I do have Celiacs - but please take note that testing doesn't completely rule out the possibility as you will discover from people on this forum.

After doing more research and talking with my GI and various specialists. Intolerances to Carbohydrates, Sucrose, Yeast, Lactose etc can also present the same or very similar symptoms to Gluten Intolerances. There are so many complex intolerances out there that are hardly known about. It appears I have a very strange combination myself that's genetic and am baffled at what changes I will need to make to my diet but I'm relieved I finally will have the answer I've been looking for after 23 yrs.

So basically, there is hope and if you haven't already and don't find much luck after specific investigation into Celiacs, give consideration to other intolerances that could be causing you these problems.

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    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • 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.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • 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. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
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