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Months of GI issues got an Endoscopy today could I be Celiac


Antny

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Antny Newbie

Hello all,

 

I’m new here and as of yet have no diagnosis but wanna throw some stuff out there.  

 

This whole thing started when I started to have severe panic attacks at the end of April and started to have terrible GERD which made it hard to eat for a while.  I got checked at the Dr with a regular blood test and the like and it all came out normal.  I weighed about 146 pounds then which while low for me (5’11” 27 M). I shrugged off as me eating less and being more active.  So essentially it was all brushed off as a possible ulcer and I was told to take it easy and given anxiety meds (which I used to be on) I decided to give up caffeine and avoided some foods for the month of May and had on and off days of abdominal pain.   Quitting the caffeine made my panic attacks worse and i found myself sitting in the bathroom at work having to breath because with the pain/headaches I thought I was dying.  For a good long while I was having nearly constant D that was pretty stinky and a lot of suddenness.  I’d have to guess i was going at least 5-7 times a day for a while.  (I also had a similar thing in March where i got nauseous and dizzy for a week after a party where I ate a ton of food/drank.  I had GERD and D then too but that cleared up. 

 

So around the beginning of June I got an appt with the doc and a GI to see what was up.  I was down to 140-141 and could see something wasn’t right.  (Granted the D wasn’t nearly as severe at this point). The regular doc put me on vsl#3 because it seemed that i wasn’t absorbing stuff and soon after I went to the GI I told him everything and i had a colonoscopy on the 25th of that month.  

 

On the follow up for that all the biopsies turned out fine which worried me. Granted my weight had been stable at 140-141lbs since the last time.  

 

I’ve had some muscle weakness (like i worked out and my muscles are shakey) this is usually worse in the morning and can get better during the day.  Tongue also seems to swell in my sleep. Ive also had on and off Geographic tongue.  I’ve also had muscle spasms (twitches?) in different places like my legs , sometimes in arms sometimes in abdomen as well as some stiffness in my hands. 

 

So we scheduled blood-work with the tTG stuff,B12, folate, etc being tested and an endoscopy.   I had the blood-work on Sat and the endoscopy today and here are the current biopsied things. 

 

LA Grade B reflux esophagitis.  

Z-line regular, 44 cm from the incisors

Gastritis. Biopsied x2

Erythematous duodenopathy

Scalloped mucosa was found in the duodenum, suspicious for celiac disease

 

I dunno if this is the right forum for this but I wanted to see if anyone else’s story lined up similarly with what I’ve been going through.  And I’ll update as I find out what’s up.   

 

Thanks everybody and have a great Monday!

 
  • 3 weeks later...

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cyclinglady Grand Master

Hi!  

Your posting was overlooked (we are all volunteers).    I am so sorry.  Just want to find out if you received a diagnosis and if you are doing okay.  

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
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      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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