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Data Rookie
Data
Posted

Hi - About 10 years ago I started developing a sensitivity to sugary foods. If I ate any treats I would have diarrhea for a couple of days after. I've had anxiety issues all my life so that only seemed to compound things. I'd worry whenever there wasn't a washroom available. At work I would have to wait for an hour after starting for them to unlock the washrooms, so I would find myself in a panic on the way to work. Sometimes I would stop at a gas station on the way, others I would find myself squatting in the bushes. If I knew there was a washroom available I was usually fine. I ended up going to meds for anxiety, and moved jobs which made things easier.

My symptoms only seemed to worsen over time. Fighting through the embarrassment I eventually saw my doctor, and he felt it was food triggered. I have always had a sweet tooth. Since sugar seemed to be a major trigger he felt it was related to bad bacteria in my gut. I ended up going on some pretty strong probiotics which seemed to help for a time. I couldn't afford the antibiotics prescribed to kill the bad bacteria, and insurance refused to cover them. Eventually they stopped working. I stopped taking my anxiety meds and probiotics, and everything seemed to clear up over the span of two weeks. Thinking it was caused by my anxiety meds, I suffered through my anxiety as it was easier than dealing with my GI issues.

I felt great for months. I could eat anything, and admittedly overindulged in sweets. After around 6 months my symptoms all came roaring back. I again tried the same regime of probiotics to little effect. Immodium and food avoidance were my only solutions. I should mention I was taking heavy antihistamines at the time for 6+ months as my allergies seemed to be getting much worse.

After months of suffering with symptoms I stopped my antihistamine, and within 2 weeks my symptoms disappeared. I figured maybe my body had a problem with long term medication use. I was still fairly careful about foods, and managed to get a few months with just minor symptoms, usually after sweet foods which I had significantly limited - only a bit on special occasions.

Like before, my symptoms again came back and had only gotten worse. I felt bloated and gassy literally all the time regardless, it seemed, of what I ate. I had diarrhea all the time, fatigue, my anxiety was through the roof, and I was totally depressed. I was afraid of going anywhere because most public washrooms are closed thanks to COVID. I started taking generic versions of Beano digestive and Gas-X which had greatly helped.  After another consultation with my doctor it was suggested that I likely had IBS and was possibly lactose intolerant.  I started taking probiotics supposedly designed specifically for IBS suffers and rotated through several, and cut out lactose completely.  I recall when that Black Panther actor died from colon cancer, that sent me into a massive panic attack as colon cancer runs in my family; albeit has always happened in old age and I'm only in my mid 30's. I've not seen any blood in my stool, but have seen mucus which seemed to indicate IBS. Regardless, my anxiety had me convinced it was something awful.

Anyway, I went for bloodwork which revealed slightly low Vitamin-D, for which I am now taking supplements, and slight fatty infiltration of my liver.  At 6' 235-240lbs it was suggested I lose weight, and I am now 200lbs.  I have also developed a few spots of psoriasis, which I am not sure if it is related or not.  The most surprising result was that I'm apparently borderline celiac, whatever that means.  Still not satisfied, I cut out gluten as best as I could and that seems to have made a huge difference.  Aside from the odd occasion I've stopped taking digestive supplements.  I suspect when I need them it's because I've unknowingly eaten gluten.  I'm feeling 90-95% normal depending on the day.  I am eating lactose again without problem, but still cannot even think about sweets.  My doctor has decided to send me for a colonoscopy to get a definitive diagnosis and ensure that nothing more sinister is going on.   I'm not sure how to get back to 100% as I'm not sure if it is still diet or anxiety that is the issue.  I really hate this gluten free/sugar free diet... but it is tolerable to something worse.  So, that's my story to date.

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trents Grand Master
trents
Posted

Welcome to the forum, Data!

How did your doctor diagnose your "borderline celiac disease"? Did he do bloodwork to test for celiac disease antibodies. Did he do an endoscopy, biospy? All or some of your digestive issues could easily have their root in celiac disease. Mucus in the stool is a common symptom of celiac disease as is oily stools.

Scott Adams Grand Master
Scott Adams
Posted

Welcome! It would be great if you could get hold of a copy of your original celiac disease blood test results and share them, with the cut off markers for celiac disease. I also am curious what "borderline" means in your case.

Data Rookie
Data
Posted
  • Author

Celiac diagnosis was through bloodwork.  I have a copy of the results.  They're sending me for biopsies, however that may be a while depending on the COVID situation here as all non-emergency procedures have been suspended.

I'm not sure if I am interpreting it correctly, but it looks like the IgG test has approximately 85% sensitivity and 95% specificity.  It's results - DEAMIDATED GLIADIN IgG - 14.2 (HI).  It looks like normal is <12.0.  It states beneath this result - BOARDERLINE.

The IgA test has a 95% sensitivity and specificity and it's results were TISSUE TRANSGLUTAMINASE IgA <0.5.  Looks like normal is <12.0.

Thoughts?

 

Scott Adams Grand Master
Scott Adams
Posted

It's interesting that one is positive, and the other looks normal, but I would still consider it a positive test result for celiac disease. Were you gluten-free for a time before you did the blood test? This could skew the results.

Data Rookie
Data
Posted
  • Author
On 4/12/2021 at 4:07 PM, Scott Adams said:

It's interesting that one is positive, and the other looks normal, but I would still consider it a positive test result for celiac disease. Were you gluten-free for a time before you did the blood test? This could skew the results.

Nope, I was still very much eating gluten at the time.  The doctors seem unsure of the result themselves.  I have a colonoscopy consult scheduled in 2 months, and no idea when I can expect the actually procedure to occur as we're in the midst of the worst COVID outbreak we've ever had.  Non-essential procedures are being postponed to reduce strain on the healthcare system.

Scott Adams Grand Master
Scott Adams
Posted

You probably know this but if you plan to do the biopsy you will need to be eating gluten daily for at least 2 weeks beforehand, but it may make sense for you to just keep eating gluten until all testing is completed, but this depends on your symptoms.

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Data Rookie
Data
Posted
  • Author
4 minutes ago, Scott Adams said:

You probably know this but if you plan to do the biopsy you will need to be eating gluten daily for at least 2 weeks beforehand, but it may make sense for you to just keep eating gluten until all testing is completed, but this depends on your symptoms.

 

4 minutes ago, Scott Adams said:

You probably know this but if you plan to do the biopsy you will need to be eating gluten daily for at least 2 weeks beforehand, but it may make sense for you to just keep eating gluten until all testing is completed, but this depends on your symptoms.

Thanks - I thought that might be the case.  My phone consultation isn't until the end of June; and with the current COVID situation here it could be quite a while before I'm able to get in to actually have the procedure done.  I'm doubtful I could make it two weeks on gluten again, but to be honest, the only reason I am pursuing the colonoscopy is to rule out more sinister problems.  I've got world class anxiety so I am always worried about colon cancer and the like.  I really don't care if it shows a gluten intolerance or not, as long as it shows there is nothing else more serious going on.  The blood tests indicates I've got it, and cutting gluten out of my diet has made a big difference.  Both of those point towards Celiac.  So if there's nothing else wrong than I'm willing to accept that I've got Celiac.

trents Grand Master
trents
Posted

Data, colonoscopies are not used to diagnose celiac disease. Endoscopies are used for that. Endoscopies reach down into the small intestine where celiac typically does it's damage. Colonoscopies don't go up that far.

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      Supplements for those Diagnosed with Celiac Disease

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    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

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      results from 13 day gluten challenge - does this mean I can't have celiac?

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      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
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