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Tusofsky

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Tusofsky Newbie
Tusofsky
Posted

Hey guys. I found this forum while trying to do some research after my doctors (Family and the GI doctor I saw) mentioned Celiac to me.

I've always felt like I had a weak stomach, prone to stomach upset and diarrhea AND constipation things like that. I get tired easy, I go through what seems like RANDOM bouts of depression and anxiety (Especially in the last couple months) I eat a lot of bread, I'd say it's a big focus of my diet. Well, in November I got sick. Horrible vomiting, diarrhea, abdominal pain. I was in the ER overnight, they said I had a high white count (About 17,000) which usually indicates a virus so that's all I thought it was.

Starting a few weeks ago I was having sudden anxiety issues. Then on Feb 16th, I got sick again, same thing. Vomiting, diarrhea, a lot of abdominal pain. And it hasn't stopped. I've had sudden days where I think I'm better, but then I crash again fast. I was told I had a UTI (UTI from hell, it widthstood a round of Cipro, and now I'm on Macrobid). Last Wednesday my bloodsugar levels dropped to 21 (yikes) but have been fine ever since (staying in the 90s). I had an endoscopy yesterday because of suspected ulcers, but of course there were none, so my doctor took a biopsy to test for Celiac. But he barely mentioned it while I was in the recovery room, then he was gone (onto the next patient).

Now I feel constipated (despite having soft stools), I still have abdominal pain, mainly on the left side. I get spasms of pain on my lower back, and even on 8mg of zofran I get slammed with heavy nausea.

Of course, the past few days I've also been eating tortillas and toast to be easy on my stomach, which I know have gluten (the celiac wasn't mentioned to me till yesterday and then today by my family doctor) I was called today being told my bloodcells are small and a little pale, and I have a pretty severe iron deficiency. I know Celiac can cause problems with iron absorption.

I'm avoiding Gluten now, just to be on the safe side until my GI doctor gets back to me, but if they don't figure out what's wrong with me soon I'm going to scream lol It's been a rough, miserable two weeks. At least Celiac would be an answer. Though honestly I'm a little scared, which is why I'm posting here. My GI Doctor was very detached and not very patient friendly so he didn't exactly leave me feeling comforted.

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GottaSki Mentor
GottaSki
Posted

Welcome!

Yes, your symptoms could very well be Celiac. At the very least it should be ruled out. Caution -- Do not remove gluten until you have had the Celiac Panel of blood work because if you remove gluten your body may not be producing the antibodies that show up in the blood work. Additionally, should you and your GI Doc decide to do an endoscopy to confirm Celiac diagnosis, you need to remain on gluten until that test is complete.

In addition to the celiac panel and iron...I suggest running all Bs, D, K, Copper, Ferritin and Zinc. Having very low vitamin/minerals in the body is one indication that you are not absorbing your nutrients which can cause many, many varied symptoms along with add weight to the Celiac Diagnosis -- the intestinal track becomes damaged in Celiac Disease - specifically the villi (fingerlike portion of small intestine that allows absorption of nutrients) become blunted.

Hope that was clear...sure many more will explain with perhaps better terminology.

Again welcome and hope you are feeling stronger very soon!

Tusofsky Newbie
Tusofsky
Posted
  • Author

Thank you for responding! He already took the biopsy yesterday, there just wasn't a lot of talk about it (I saw him for like 20 seconds after my endoscopy before he was gone in a flash) And my regular doctor is running labs off blood they took last week. So I'm hoping if I stick to rice, mashed potatoes, eggs and such, things that are easy on my stomach AND gluten free, I'll start feeling better. I've been missing way too much work because of this already.

They're putting me on an iron supplement, which I'm about to go pick up. It sounds like the lack of iron is causing some problems (Fatigue, joint paint, headaches... Possibly the anxiety? I've never had problems with anxiety before this year but I have battled depression before) but the abdominal pain, bloating, vomiting/nausea, diarrhea/constipation is still going unexplained for me unless I just also happen to have a nasty case of gastritis. Which may be case, I don't know at this point.

If I am told I DO NOT have Celiac from the biopsy, should I ask about a gluten-free (or less) diet anyway and see what they say? I've been reading it does help people with stomach problems, even if its labeled IBS. I really just want to get better...

GottaSki Mentor
GottaSki
Posted

A positive tTG IgA blood test confirms Celiac Disease -- but there are often false negatives. With your symptoms it can not hurt you to go Gluten Free -- it is not easy to make the transition long term, but well worth it if it brings health.

Glad you have already had the blood work along with endo. It will be interesting to get the pathology report to see if there is blunting of your villi along with biopsy info (the biopsies are often negative - depends how many and where the Doc took the samples).

I hope you start healing right away, but don't be discouraged if it takes awhile to notice improvement upon going gluten-free. It seems the longer we go un-diagnosed the more damage to our intestinal track -- hence longer healing times.

You have found the best place for Celiac/Gluten related questions...so many here helped me when I was ready to pull my hair out when first diagnosed as well as answered every question I've had along the way.

PS...you may want to add some fruit, vegies and meat the list...eating too many starches can be hard on the healing gut too...they are great gluten-free items...just make sure you keep it balanced.

Good Luck to you :)

Tusofsky Newbie
Tusofsky
Posted
  • Author

I'm eating banana, and egg too to try and have some protein. My appetite is very low right now, but I'm trying to keep myself fed lol

Thanks so much for your replies :) This seems like a really nice forum. I know I won't hear from the doctor over the weekend (Urg. I hate waiting on all these labs. Driving me crazy) but I'm starting my iron supplements they called in for me and gonna try and keep gluten free for the time being, hopefully I'll be okay for work this week. I've missed so much! But I'll post my results when they come in.

Tusofsky Newbie
Tusofsky
Posted
  • Author

Sorry if TMI, but I was constipated for the last few days (I hadn't had a bowel movement since Thursday morning, early and it was very small then I felt like I needed to go but I couldn't) now I'm back to having diarrhea :( I'm very scared about what's going on with me, I keep flying back and forth between being semi-okay (only thing consistent is my pain) and crashing to the ground. I just wish I knew what was happening...

Tusofsky Newbie
Tusofsky
Posted
  • Author

Apparently my family physician is NOT running blood panels for celiac and I'll need to have more blood taken now if I want that done, with my GI doctor. I guess it all depends on what my endoscopy says but. . Should I go back on gluten now just in case? I'm scared to because I don't want all my symptoms rushing back at me (I'm having constipation, pain, and dehydrating real easy now) but I'm scared of my nausea hitting me full force again, and the pain getting worse. But. I don't know. I feel really lost right now to be honest.

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GottaSki Mentor
GottaSki
Posted

Apparently my family physician is NOT running blood panels for celiac and I'll need to have more blood taken now if I want that done, with my GI doctor. I guess it all depends on what my endoscopy says but. . Should I go back on gluten now just in case? I'm scared to because I don't want all my symptoms rushing back at me (I'm having constipation, pain, and dehydrating real easy now) but I'm scared of my nausea hitting me full force again, and the pain getting worse. But. I don't know. I feel really lost right now to be honest.

Check with your GI doctor. Was the endoscopy specifically for Celiac Diagnosis? If not he may not have taken the proper samples. If it was specifically for Celiac -- did they draw any blood before the endo? My Celiac GI always takes blood the day of the endoscopy to verify that I am not accidentally ingesting gluten.

I wouldn't go back on gluten if you are having improvement to your digestive symptoms -- post your endoscopy results in a new thread if you don't understand them...there are many in this forum that can help you interpret the results.

When you had blood run...did they happen to run B6, B12, D, Iron or other minerals (Ferritin, Copper, Zinc) -- being low or deficient in vitamins and minerals can indicate that you are not absorbing your nutrients due to intestinal damage caused by gluten.

Tusofsky Newbie
Tusofsky
Posted
  • Author

They didn't run any others, no. I got a call today and my biopsy did come back negative but NO it was not a specific to look for Celiac. So. I go in on the 13th, and I'm going to request bloodwork and try to get him to talk to me more in depth

It's frustrating to get a call "Found nothing, we don't know, sorry" then I have to be the one to be like "Can I have a follow up?" urg. Doctors why.

I haven't SEEN the biopsy results myself though, I'm going to request a copy when I go in. This was just over the phone.

GottaSki Mentor
GottaSki
Posted

Can't recall how long you have been gluten-free. You need to have been eating substantial amounts of gluten for several weeks before the celiac blood panel.

Tusofsky Newbie
Tusofsky
Posted
  • Author

It's literally only been 3 days, not even a full week. The vanishing of symptoms could even be a placebo effect (not everything went away, just lack of headache and nausea), I'm trying to keep that in mind. But considering I've always had digestive problems, and a few other symptoms that seem to be common in celiac's, I want to rule it out at the very least. Even while I was sick though, I was eating toast and the like, and prior, bread is a huge part of my diet (I adore pasta) but I'll talk to him about it and see what the doctor says. I'm seeing my family doctor as well, the day before for follow up on my UTI, and I plan on mentioning it to him, he's a billion times more patient friendly.

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