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Sick And Tired Of Being Sick And Tired!

Blsdxs2

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Blsdxs2 Newbie
Blsdxs2
Posted

Hello everyone. Newbie here. I'm Kimberly.

I'm sick and tired of being sick and tired.

My story in a nutshell:

Active, healthy- for the most part, travel for a living so my diet is crazy. Have had problems over the years with my tummy. Mainly diarrhea on a daily basis. Certain foods would just run right through me...Pizza for sure! Pain on my right side has landed me in the hospital a few times. (maybe 6 bouts in about 15 years) No appendicitis and all blood tests and colonoscopy are negative. The pain come and goes. Sometimes it can get really bad. Mostly its a dull ache then I experience the sensation of a hot poker being jabbed into me. Again, all tests come back normal. UGH! I have all my parts for a 50 year old too. Well, about 2 years ago I started getting sick a lot off and on. Flu like symptoms. Completely run down. Thought it was menopause. Started hormones. Still exhausted. Tummy bloat like there is no tomorrow. Sleeping all the time. Headaches. Sad. Gained about 30 pounds too! I just feel like crap! Then, about 3 months ago I got hives. They started on the back of my neck, under my breasts, on my lower abdomen and lower back. I itch like crazy. They sort of go away (not really, just fade) and come right back. Went to the dermo, they gave me cream, soap etc,,, and I take a Claritin daily now. The whelps are still there, in fact sometimes they burn on the inside too (No, not shingles, scabies or anything like that...just hives). I haven't changed anything nor started anything new. I asked my GP for a Celiac test. Came back negative two weeks ago. I told myself the heck with this and have taken myself off all gluten. I've been Gluten free for about two weeks now. Still exhausted, but I haven't had diarrhea! This morning I noticed my hives are fading! There aren't any on my neck and under my boobs, my skin is just discolored, but no hives. I still have them on my tummy, lower abdomen and back, but nothing like before. The pain on my right side is still there, but it's not a pain-pain anymore. More of a dull ache. 

I know I should have had further testing before I took myself off Gluten. But the next available appointment wasn't till the end of June for an endoscopy. Like I said, I am sick and tired of being sick and tired! 

I'm reading Wheat Belly and find it very informative. I've also found the grocery store, Alde in my area. They have an abundance of Gluten Free foods! 

So, my question is, do I sound familiar? Could all this be related to Gluten? Or, am I just going crazy? Cuz actually, I do feel like I'm going crazy. 

 

Thanks for those that read through my story. Any advice would be greatly appreciated. 

 

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ravenwoodglass Mentor
ravenwoodglass
Posted

You do sound like one of us. You mention a wait until the end of June for an endo. The first step is usually a blood test. Get back on gluten a slice or two of bread a day is considered enough. Immodium and an anti-inflammatory will not impact celiac testing. Many will eat the slice or two at night and find that helpful. There is a chance your blood test might come back positive even though you have been gluten free for two weeks as it can take some time for antibodies to go down.  To be certain of the most reliable test you should challenge first though. 

Blsdxs2 Newbie
Blsdxs2
Posted
  • Author

Had the blood test, it came back negative.

cyclinglady Grand Master
cyclinglady
Posted

But did you have a complete panel? My GI ordered the complete panel and I only had one positive on one of the DGPs. . The standard TTG was negative. My biopsy revealed severe damage. Here is the complete panel:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

You sound like you might have DH (celiac rash). I would suggest you review our DH section. DH also might be the cause of your negative blood test (I am not very knowledgeable about DH). The skin would need to be biopsied and read up on how the doctor can biopsy the hives as it is critical they get it right.

You can just remain gluten free. That is what my husband did 14 years ago, but he would be the first to tell you that I get more support with an official diagnosis. It has been beneficial for my family as well in terms of testing and identifying others with celiac disease.

I wish you well!

Blsdxs2 Newbie
Blsdxs2
Posted
  • Author

Thanks y'all!

According to my blood test, it was only one test. I don't believe they did a panel. The thought of eating gluten again, worries me a great deal. I'm finally starting to feel better. I don't have my headache today, I haven't had a dizzy spell either. The rash is only on my tummy now too. My hives are actually going away! Praise God!

I am going to stay Gluten free until I see the gastro doc.

Question: if I stay gluten free, will an endoscopy reveal the truth or will I have to be eating gluten?

Thanks

cyclinglady Grand Master
cyclinglady
Posted

You have to still be eating gluten or all the tests (blood or endoscopy/biopsy) Will most like invalid. You can research this and other testing requirements at the University of Chicago's celiac website.

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