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Feeling Terrible

TabithK

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TabithK Newbie
TabithK
Posted

Hi, I am new here. I am here because I saw a GI doc and the possibility of celiac came up. I am having a scope done in a week because the blood test that I have had in the past came back inconclusive (I dont understand that) My doctor did say that the scope with biopsy is the best way to test. 

 

So here is my story-I have always had "tummy trouble" going to the bathroom shortly after i eat and tummy pain. I have had sever joint and muscle pain over the last almost 2 years so I went to my doctor and a specialist and was diagnosed with fibroyalgia. Which is completely useless because they dont know how is happens or how to fix it. The meds they gave me had horrible side effects so I quit taking them and never went back to the specialist. I have always struggled with depression and anxiety-been on many different meds for it. 

 

Fast forward to last Sunday. I woke up and felt like complete crud. I was beyond exhausted and didnt understand why. I ended up chalking it up to a busy week and fibro flaring up. By the evening i was nauseous and by Monday morning I was still feeling terrible, still exhausted even with lots of sleep and my abdomen was tender to the touch. I went to my doctor and she thought that it was my appendix so she sent me to the ER. They did a CT scan and it came back normal so they sent me home. Still feeling terrible. 

 

I managed to get into a GI doc today who went over my history, ordered another celiac blood test and scheduled a scope for next week. Celiac seems to be at the top of his list but he wont commit to anything. He said it could also be an ulcer, food allergy or IBS? 

 

Is it normal for Celiac to get worse all of a sudden? It doesnt seem to matter what I eat, whenever I eat Im in the bathroom and in pain for a few hours afterwards now. Although Im sure there is gluten in what im eating.  I am still nauseous and the exhaustion is coming and going. 

 

The diet change for me would be REALLY hard but if it meant feeling better I would do it with a smile! I am not "hoping" for celiac but hoping for answers. It seems like a "too good to be true" situation if changing my diet could solve all of my issues. 

 

Right now just sitting here I am in so much pain in my body. I just want it to stop. I want to be able to fix it. So theres my story, if you can offer any advice or wisdom id appreciate it. <3  

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beth01 Enthusiast
beth01
Posted

The thing with celiac is if you eat gluten ( two different proteins that are found in wheat, barley, rye, oats) it destroys the villi in your small intestines.  It seems a lot of people have a burning pain that goes a long with it.  I just got my celiac diagnosis three months ago and my stomach is still messed up, I have been sick my whole life, all thirty seven years of it.  It takes time to heal, anywhere from months to years.  The last few years before my diagnosis my health would go in streaks.  Sometimes I would feel really good for a while and then I would feel awful for months on end.  It gets worse before it gets better.

 

In about two weeks you should know for sure.  I would find out just what tests were drawn and the results, it is easier for us to interpret them.  Then we can also give you a little guidance into what other tests should be done to truly either rule out celiac or diagnosis it.  Some people never get a true diagnosis but find that being totally gluten free makes them feel better so they stick with it. Don't stop eating gluten until you are done with your testing though.

 

The diet seems overwhelming at first but once you start feeling better, it is worth it.  You might want to read up a little about it.  There is a newbie thread on here that talks about the diet and cross contamination.  You could get a head start.

 

In my opinion, doctors throw a lot of diagnosis at us when they really don't know the reason why.  Yes you might have depression and anxiety, but why?  Some doctors would rather throw pills at you than figure out why you are depressed.  You feel like s$#&, that's why.  IBS is another bull pucky diagnosis, I have seen someone reference it to " I Be Stumped".  Once again, yes your bowel is irritated but why? 

 

Good luck with getting your answers so hopefully you can be on the road to recovery.

GF Lover Rising Star
GF Lover
Posted

Hi, I am new here. I am here because I saw a GI doc and the possibility of celiac came up. I am having a scope done in a week because the blood test that I have had in the past came back inconclusive (I dont understand that) My doctor did say that the scope with biopsy is the best way to test. 

 

So here is my story-I have always had "tummy trouble" going to the bathroom shortly after i eat and tummy pain. I have had sever joint and muscle pain over the last almost 2 years so I went to my doctor and a specialist and was diagnosed with fibroyalgia. Which is completely useless because they dont know how is happens or how to fix it. The meds they gave me had horrible side effects so I quit taking them and never went back to the specialist. I have always struggled with depression and anxiety-been on many different meds for it. 

 

Fast forward to last Sunday. I woke up and felt like complete crud. I was beyond exhausted and didnt understand why. I ended up chalking it up to a busy week and fibro flaring up. By the evening i was nauseous and by Monday morning I was still feeling terrible, still exhausted even with lots of sleep and my abdomen was tender to the touch. I went to my doctor and she thought that it was my appendix so she sent me to the ER. They did a CT scan and it came back normal so they sent me home. Still feeling terrible. 

 

I managed to get into a GI doc today who went over my history, ordered another celiac blood test and scheduled a scope for next week. Celiac seems to be at the top of his list but he wont commit to anything. He said it could also be an ulcer, food allergy or IBS? 

 

Is it normal for Celiac to get worse all of a sudden? It doesnt seem to matter what I eat, whenever I eat Im in the bathroom and in pain for a few hours afterwards now. Although Im sure there is gluten in what im eating.  I am still nauseous and the exhaustion is coming and going. 

 

The diet change for me would be REALLY hard but if it meant feeling better I would do it with a smile! I am not "hoping" for celiac but hoping for answers. It seems like a "too good to be true" situation if changing my diet could solve all of my issues. 

 

Right now just sitting here I am in so much pain in my body. I just want it to stop. I want to be able to fix it. So theres my story, if you can offer any advice or wisdom id appreciate it. <3  

 

 

I Tabith, and Welcome to the Forum.

 

First make sure they did the correct blood tests.  

 

Open Original Shared Link

 

Here is all the symptoms that can be associated with Celiac.

 

Open Original Shared Link

 

When he does the endoscopy, make sure he takes 6 to 8 biopsies, most damage cannot be seen with the naked eye.

 

Read the Newbie 101 thread under the Coping Forum.  Great Info.

 

Good luck with your testing.

 

Colleen

TabithK Newbie
TabithK
Posted
  • Author

Thank you for your responses. I have another question...They gave me a script for bental (sp?) in the ER. I guess its a muscle relaxer for your stomach? Anyways, My GI doc said to go ahead and take it and it does seem to be helping. Would it still help if i had Celiac? I am wondering if because the med is helping that maybe celiac is not likely? 

 

This stuff has taken over my brain. ugh. 

Georgia-guy Enthusiast
Georgia-guy
Posted

If it is a muscle relaxer for your stomach, then it would be relaxing the stomach and likely also the intestines....and in my experience with muscle relaxers, also numbing them a bit. That being said, it could be treating a symptom, not a cause. Comparison to what I'm saying would be your fibro is flaring up. (From what I understand about fibro, it's all about pain.) You take some pain meds, treating the symptom of pain, but not the cause of the pain which is the fibro.

TabithK Newbie
TabithK
Posted
  • Author

That makes sense. Thank you! 

LauraTX Rising Star
LauraTX
Posted

It is called Bentyl (Dicyclomine) and here is some info on it: Open Original Shared Link

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