Terrified

[Riley72]

Hi. I contracted an extremely mild case of Covid in Jan 2021. Life has been hell since. I have lost about 40lbs. Honestly I just developed a sense of taste again so I thought it was that but….recently I had started to become overwhelmingly nauseous, vertigo, lava like acid reflux,  and have suffered from constipation for a few years. Ultrasound showed gallstones and had gall bladder removed. Nothing has changed. I cannot eat or when I do I cannot gain weight. I have stabbing pains along my diaphragm, mostly left, and down the center of my stomach. I have intense pain under my sternum that radiates to back that leaves me in agony. I hate to talk poop but I’m over it. It’s fluffy and floats and is sometimes alarmingly frequent(24 non-diarrhea BM’s in 7 days)or I am constipated to the point of using laxatives because I cannot tolerate fiber. I live alone and still can’t smell, thank goodness.  I would swear I am 5 months pregnant because there is a baby moving in there. The rolling, twitching, spasms. That alone is freaking me out. I am  a 49 yo female. I have been absolutely dismissed by every doctor as having psych issues when they see the list of meds for the sudden, intense anxiety I have started to experience. I had one check in between my toes for track marks. I am a nurse in that hospital. Ever worsening depression, possibly situational. Extreme irritability at times. Again, could be me.  I cannot do 1/5 of the activities I used to due to fatigue and pain.  Ending/colonoscopy came back normal. He biopsied a polyp. LFT/ Thyroid panel and numerous CBC’s in ER all normal. If I am told by one more doctor that this is stress, I will shoot first and they can ask me why later. I have celiac panel on 12/30. The doctor has never mentioned this to me. I just saw it on the script. Oh yeah! My blood pressure keeps being extremely elevated (174/114) and had been on meds earlier this year and was able to stop and now it’s back. Also started having what I can only assume are migraines this year. My teeth are all of a sudden bad 8 where I have had no issues before. Any of this sound like something other than celiac lol? Thanks in advance. I’m sure you’ve all been through these questions before. 

[trents]

Welcome to the forum, Riley72!

Many or most of the symptoms you describe are common in the celiac community. You mention you had a celiac panel done almost a year ago. What were the specific results? For the antibody panel to be valid you must be eating regular amounts of gluten daily for 6-8 weeks before the test and for the endoscopy/biopsy to be valid you must be eating regular amounts of gluten daily for at least two weeks pre test. This is from the Mayo Clinic guidelines and they define a regular amount of gluten as the amount of gluten found in two slices of wheat bread. I bring this up because it sounds like you have not been eating much.

Another option you have is to just start eating gluten free and see if your symptoms don't improve.

[Scott Adams]

I agree with @trents and hopefully you can get a copy of the blood test results and share them here. Unfortunately negative results won't rule out non-celiac gluten sensitivity, which may be 10x more prevalent than celiac disease.

[Riley72]

I get tested on Tuesday. I have not been tested previously. I received no instructions for testing. Literally the only time I feel ok is when I don’t eat at all so I generally don’t. I have noticed that my sugar cravings for things like cookies and pastries has disappeared which is weird because the only strong taste I have is for sugar. I haven’t been intentionally trying to be gluten free. I absolutely cannot do that and work so that leaves me at square one?

[trents]

Why can't you eat gluten free and work? Can't you take your own food from home?

[Riley72]

On 12/24/2021 at 11:05 PM, trents said:

Why can't you eat gluten free and work? Can't you take your own food from home?

To do the blood testing. I am unable to eat and work at the same time. I eat on my days off. So I am unable to get in 2 slices of anything daily. And even then…I am awaiting Dr appt. Tomorrow because the biopsy of my polyp has come back with something. I’ll ask then. It also shows in my record that they found an ulcer and pneumatosis in my small intestine. Are these also signs? Thanks  I know I sound flippant but I don’t feel good and I feel blindsided but this  

 

 

[trents]

Foul smelling and excessive flatus is a common symptom of celaic disease but not pneumatosis as far as I know. SIBO and H.Pylori are commonly associated with celiac disease so small bowel ulcers are probably more common in the celiac population than in the general population. As far as the polyp goes, small bowel cancer is more common in the celiac population than in the general population. You might also consider getting genetic testing done to establish the potential for celiac disease. There are two genes so far that have been identified as establishing potential for celiac disease. DQ2 and DQ8.