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Could This Be Celiac?


Rosenberg

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Rosenberg Newbie

Guys, it all started about five years ago, one day I was healthy and happy, the other I was s$#&ting blood and afraid of having cancer or aids (spent three years living hell in my mind because I thought I was dying). Anyway, let me get to my list,

Summarizing the symptom list:

- Diarrhea (which lingers 'til this very day - 5 years later, depending on what I eat)

- Bloody diarrhea (lasted for a few months and then it suddenly stopped)

- Strong cramping lower abs (0-10 pain scale I'd certainly pick 9, it's a very desolate and agonizing pain) - it's a pain that come and goes without any plausible explanation

- Panic Attacks (lasted for a few months, was able to overcome on my own)

- Hair loss every where in my body (still lingers)

- Palpitations \ _ Both symptoms are prone to happen after I eat something,

- Tachycardia / along with other symptoms like lightheadness, dizziness, fatigue.

- Rapid weight loss - I lost almost 20 pounds overnight when this all started, and I am unable to normally gain any weight at all, I could eat things like a whole medium pizza and maintain the same weight. I am currently 5'7 weighing 143 pounds and struggling to try to not lose any more weight, since I am already skinny enough.

- Short-term memory loss - (probably due to B12 deficiency that they found on me)

- Skin discoloration on the penis - it didn't seem to worry any of the urologists or dermatologists I went to.

- Hypoglycemia (lingers 'til today, I find this a very important symptom)

- Stool changed color when this all started, from a darkish brown to a light tan and it sometimes floats, sometimes doesn't and its never consistent anymore. I also use to go once every two days, now I go once or twice everyday.

- I am probably forgetting some symptoms, after all, it's hard to put down a five years list of symptoms.

I am suffering HORRORS, going bald, tachycardic, cramping, you guys can pobably imagine. I went to a gazillion doctors that told me that I am hypochondriac or quickly gave up on my case. The dermatologist said I wasn't balding because new hair was growing back on the lost hair place, but hey, it falls quicker than it grows so theres a huge balding spot on my head now.

I am now going to put some important exams I have done:

- Colonoscopy (normal)

- Endoscopy (3x mild gastritis only)

- fMRI of the whole abdomen (gallstone)

- fMRI of the brain (normal)

- Ultrasound (4x whereas the first three times revealed hepatic steatosis and gallstone, the last time revealed a normal liver and gallstone)

- CBC (30-40x normal, except once when I was feeling a very strong cramping, it revealed a slightly elevated white count, doctors even highlighted it and almost opened me up thinking it was apendicitis)

- Glucose tolerance test and fasting glucose (Pre-Diabetes)

- Thyroid tests (T4, TSH, etc) - this was the initial concern but its all normal

- HIV, Hep. A, B, C (all negative) - along with many other infections

- And many other blood work (except for celiac disease)

Abnormal findings:

- Gallstone

- Pre-Diabetes

- Hypoglycemia

- B12 deficiency

Diagnosis that I received over these five years:

- IBS (without any real proof)

- Hypochondriac (tried going to a shrink and ignored my symptoms for a whole year, but they continued)

- Psychosomatic problem

- I don't know what it could be

- I'll refer you to my colleague

- Hm, interesting case...

Prognosis they gave me:

- Yeah, it's not something so serious, because if it was, you'd be dead by now.

I finally found celiac disease after an extensive research and it would explain A LOT. I got the request to do the exam in hands, but I am afraid that it wont detect the anti-body.

Is there a sure fire way to diagnose this condition? It's a very strong guess that could finally give me relief to know with what I been suffering.

Thanks guys!!!!!


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Angi McFarland Newbie

HI-

I have had a few of those issues which can be caused by the stress of not knowing what is wrong with you. Get on a strict gluten-free diet, and track your reactions. Slowly add foods to your diet and seehelp or read the blogs and try some gluten-free books on the subject.how you react. Only add one thing a day to get the best results. A nutritionalist can help you get started on a good plan if you need help with your diet.

Good luck, and read up!

KahleFamily Apprentice
Guys, it all started about five years ago, one day I was healthy and happy, the other I was s$#&ting blood and afraid of having cancer or aids (spent three years living hell in my mind because I thought I was dying). Anyway, let me get to my list,

Summarizing the symptom list:

- Diarrhea (which lingers 'til this very day - 5 years later, depending on what I eat)

- Bloody diarrhea (lasted for a few months and then it suddenly stopped)

- Strong cramping lower abs (0-10 pain scale I'd certainly pick 9, it's a very desolate and agonizing pain) - it's a pain that come and goes without any plausible explanation

- Panic Attacks (lasted for a few months, was able to overcome on my own)

- Hair loss every where in my body (still lingers)

- Palpitations \ _ Both symptoms are prone to happen after I eat something,

- Tachycardia / along with other symptoms like lightheadness, dizziness, fatigue.

- Rapid weight loss - I lost almost 20 pounds overnight when this all started, and I am unable to normally gain any weight at all, I could eat things like a whole medium pizza and maintain the same weight. I am currently 5'7 weighing 143 pounds and struggling to try to not lose any more weight, since I am already skinny enough.

- Short-term memory loss - (probably due to B12 deficiency that they found on me)

- Skin discoloration on the penis - it didn't seem to worry any of the urologists or dermatologists I went to.

- Hypoglycemia (lingers 'til today, I find this a very important symptom)

- Stool changed color when this all started, from a darkish brown to a light tan and it sometimes floats, sometimes doesn't and its never consistent anymore. I also use to go once every two days, now I go once or twice everyday.

- I am probably forgetting some symptoms, after all, it's hard to put down a five years list of symptoms.

I am suffering HORRORS, going bald, tachycardic, cramping, you guys can pobably imagine. I went to a gazillion doctors that told me that I am hypochondriac or quickly gave up on my case. The dermatologist said I wasn't balding because new hair was growing back on the lost hair place, but hey, it falls quicker than it grows so theres a huge balding spot on my head now.

I am now going to put some important exams I have done:

- Colonoscopy (normal)

- Endoscopy (3x mild gastritis only)

- fMRI of the whole abdomen (gallstone)

- fMRI of the brain (normal)

- Ultrasound (4x whereas the first three times revealed hepatic steatosis and gallstone, the last time revealed a normal liver and gallstone)

- CBC (30-40x normal, except once when I was feeling a very strong cramping, it revealed a slightly elevated white count, doctors even highlighted it and almost opened me up thinking it was apendicitis)

- Glucose tolerance test and fasting glucose (Pre-Diabetes)

- Thyroid tests (T4, TSH, etc) - this was the initial concern but its all normal

- HIV, Hep. A, B, C (all negative) - along with many other infections

- And many other blood work (except for celiac disease)

Abnormal findings:

- Gallstone

- Pre-Diabetes

- Hypoglycemia

- B12 deficiency

Diagnosis that I received over these five years:

- IBS (without any real proof)

- Hypochondriac (tried going to a shrink and ignored my symptoms for a whole year, but they continued)

- Psychosomatic problem

- I don't know what it could be

- I'll refer you to my colleague

- Hm, interesting case...

Prognosis they gave me:

- Yeah, it's not something so serious, because if it was, you'd be dead by now.

I finally found celiac disease after an extensive research and it would explain A LOT. I got the request to do the exam in hands, but I am afraid that it wont detect the anti-body.

Is there a sure fire way to diagnose this condition? It's a very strong guess that could finally give me relief to know with what I been suffering.

Thanks guys!!!!!

I have had similar issues, even a change in pygmentation in the skin on my lower back. This happened to me when I was pregnant with my son.

I hope there is hope to figuring this out, because my doctor is trying to put me through a bunch of hoops like this as well. I have a strong distaste for conventional medicine (if you have ever seen SLC Punk, I'm like Bob I can hardly take anything for my headaches) so, I have thrown in the towel early, before they could test me out the wazoo. What I have done is to get involved in all the celiac and gluten free forums I can, to ask questions and learn about the diet transition.

There are some great resources on this very site which can help you to go gluten free.

I have been called a hypochondriac and a medical mystery as well.

Have you been tested for celiac? I know you have been through a lot of tests, but if you don't want to go through all the food avoidance, it may be an option.

I hope you get some closure. The symptoms sound like celiac disease to me

txplowgirl Enthusiast

Hi Rosenberg,

Welcome to the place.

I understand what your're going through definetly. 38 years of off and on diareha, stomach cramps so bad doubled over and not being able to breathe. Pain all over, depression, anxiety out the wazoo. Insomnia, maybe get 2 to 3 hours sleep a night.

When I was a kid and cried to my parents about it, my dad would just tell me I was lazy or it was all in my head. Dr's put me on medications but for some reason nothing worked, made everything worse instead. Because meds didn't work at all, dr's told me I was making all the symptoms up to get attention!

Finally, last year was dx'd with fibromyalgia and rheumatoid arthritis. Again, meds for that didn't help, made everything worse. Finally, 1 day I came across an article that stated that about 85% of fibro patients have food intolerances. Ok, dug deeper, found out about gluten, WOW! Ok, decided to study the diet for about 4 months before I decided to try it.

I said to hell with it and did it. I WILL NEVER GO BACK TO GLUTEN!

I have NEVER in my life felt this good.

Sorry for the long post but I wanted you to understand where I was at and where I am now.

Go gluten free and I bet you will be astonished at how you feel in a month.

Start an elimination diet. Eat fresh foods, Keep a food journal, Also be aware that you may have other food intolerances too.

Keep asking questions and do a lot of reading on this website, everyone here has helped me and they can help you to.

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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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