I think I might be celiac?

[Random.user556]

Hello! I’m sorry in advance for the long post!
 

Over the past few months I’ve been having a lot of issues with my stomach and have recently been referred to a Gastroenterologist. I’ve had stomach pain and issues since I was a baby. I had bad constipation (still do) and couldn’t tolerate most formula as a baby. When I was around 8 I started experiencing a lot of lower abdominal cramping (just below the belly button) and ended up missing a fair amount of school because of this. It would start about 2 hours after eating breakfast and I’d have lower abdominal cramps and feel nauseous . After a visit to my family doctor it was brushed off as separation anxiety.. or as the doctor put it “I was just a kid who wanted to stay home from school”. This stomach pain persisted all through my elementary and high school years. In fact I still experience it to this day and I’m now 24. Along with this my doctor believes I have a form of disautonomia called POTS (Postural Orthostatic Tachycardia Syndrome). I frequently feel unwell and exhausted. I also experience Raynaud’s phenomena especially during the winter months or when I’m sick. I also can not tolerate heat for the life of me.. although I’m not entirely convinced my symptoms are from POTS. The last few years I’ve also started experiencing frequent chronic sinus infections up to 5 a year most of which I require antibiotics for… Up until two years ago I have never had allergies or sinus problems.

Back to my stomach issues…

The last year I have been experiencing lots of stomach bloating and discomfort especially at night.. this has led to a few nights of 3am vomiting.. my doctor tested me for H. Pylori which was negative as well as full work ups to test my kidneys, liver, pancreas, gallbladder.. all of which were normal. At this time he also started me on Rabeprazole 20mg twice daily which is a Proton pump inhibitor (PPI) … as he believes it could be GERD. The PPI has not helped at all and I have since been moved down to once daily which I wait for a referral to a Gastroenterologist for an endoscopy as well as an abdominal ultrasound to verify I have no gallstones..

The pain I feel in my abdomen feels very heavy right around my bellybutton and frequently is accompanied by nausea and occasionally I also experience sharp stabbing like pain left of my belly button. I began tracking my symptoms, what I’m eating and bowel habits on an app called “My IBS” which track’s symptoms and flags foods that could be potential triggers.. all of my flagged potential triggers seem to be gluten related foods like pasta and breads. I asked to be tested for Celiac as I have an uncle with it. My doctor only sent for TtG IGA.. no other tests. My results came back negative at “<0.5 U/ml” the reference range being “ <12 U/Ml”. I am aware that total IGA should of been ordered as well but my doctor is confident we have ruled out celiac so I guess I will have to wait for the Gastroenterologist for more testing..

The other red flag for me is I have a rash that shows on both my knees and recently I have developed a similar rash behind both of my ears, on my neck and into my scalp.. there is dozens of small red and skin coloured lesions that sort of? resemble pimples but have a “head” and don’t pop (yes, i know don’t pop your pimples!) they are also itchy and sore.. I have tried washing and scrubbing them with antibacterial soap and body wash to no avail as well as ensuring I rinse my neck thoroughly after a shower, keeping my neck dry, frequently changing pillowcases and even keeping my hair off my neck as much as possible … it doesn’t have any effect on it. 

In your experience does this sound like I could be experiencing celiac? I’ve debated going gluten free to see if my symptoms persist or begin to clear up.. any suggestions or help is appreciated! 

[Scott Adams]

Many of your symptoms could certainly be related to gluten sensitivity or undiagnosed celiac disease, and it's unfortunate that your doctor didn't follow the testing Mayo Clinic recommended testing protocol for celiac disease and do a full panel, including total IGA. 

Since your doctor is convinced you don't have it, even though you have an uncle with it and have linked some of your symptoms with gluten consumption, you have some choices to make. 

If you need a formal diagnosis in order to stay on a gluten-free diet, you could find a new doctor, convince your current doctor to re-test you with the full blood panel (see below), or order your own test via an online company.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

[Random.user556]

Hi @Scott Adams, it is indeed unfortunate that my family doctor hasn’t done proper testing and has ultimately decided I am negative. Unfortunately I am not in a position to find a new doctor as we have a bad doctor shortage and this is the first time I’ve had a family doctor in almost 10 years.. there is also no walk in clinics where I live. 
 

While I wait for my referral to a GI I have debated going off gluten entirely to see if it makes a difference but I know in order to be properly tested for Celiac that I must be eating gluten… I know gluten is definitely a trigger for my stomach problems it’s just a matter of if going gluten free in the mean time is worth it.. I unfortunately don’t know how long of a wait it will be until I see the GI nor how long it will be until I can have an endoscopy done. 
 

As for the rash I’ve been experiencing do you think I should hold off until I see the GI or bring it up to my doctor in the meantime? It definitely seems to come and go and at times it’s so itchy but painful to scratch.. I thought it was acne for a long time but no matter how much I try to keep my skin clear it doesn’t go away. It also doesn’t really look like acne.. they’re more like small blisters. 

[Scott Adams]

If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful:

Also, you only need to eat gluten daily, lots of it, for 2-3 weeks before your endoscopy, so you may want to test out a gluten-free diet if you think it might be a while before your endoscopy.

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[Random.user556]

Thank you for all the information! I’m going to read through this tonight. I think I might try going gluten free in the meantime and see if it helps my symptoms. I’m also going to talk to my doctor about being taken off the PPI’s as they’ve made no difference to my symptoms and I know they can be quite damaging.