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help please could i be DH

melissa-clyde

By melissa-clyde
in Dermatitis Herpetiformis

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melissa-clyde Newbie
melissa-clyde
Posted

Hi

 

I have just com across this today and was wondering what you all think.

 

I went to the doc in July last year I have been suffering on and off with abdominal pain right side under rib, they initially thought it was gall bladder stones so I had an ultrasound but that was clear, I also had CBC and that showed up slightly enlarged red blood cells but only slightly. I was then tested for b12 and folic acid which was all good.  I was supposed to go back for a health check for the nurse but I sold my house and life got in the way.

Now I have moved the pain is back worse than ever and I have now got this blistering on my skin, I went to the walk in clinic (as I haven't got a new doc yet) and the nurse said contact dermatitis which iv had now for about a week, she gave me 1% steroid cream and said use for a week, I still have the blistering although it did calm for a couple of days. I still have abdominal pain which radiates up my right side to my shoulder sometimes.

 

thanks

Mel

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squirmingitch Veteran
squirmingitch
Posted

What you are describing could be anything. If you want to get tested for celiac then you have to stay on a gluten filled diet and get the blood tests.

Irene Joanne Explorer
Irene Joanne
Posted

I had "gallbladder" pain for years. Every time I had tests done to check for gall stones or gall bladder function they were fine. Finally found out I have celiac. I believe pain in the gallbladder area often is undiagnosed celiac.

i know of someone who had their gallbladder removed- still had the pain and then found out he had Celiac. A gluten free diet completely took the pain away. 

cyclinglady Grand Master
cyclinglady
Posted

I can only suggest a HIDA scan.  You might not have gallstones, but you could have a non-functioning gallbladder.  

shariberry Newbie
shariberry
Posted
On 1/11/2016 at 8:43 PM, Irene Joanne said:

I had "gallbladder" pain for years. Every time I had tests done to check for gall stones or gall bladder function they were fine. Finally found out I have celiac. I believe pain in the gallbladder area often is undiagnosed celiac.

i know of someone who had their gallbladder removed- still had the pain and then found out he had Celiac. A gluten free diet completely took the pain away. 

I was diagnosed with Celiac in September of 2014 and I still have the pain in my left side. Sometimes it is not as bad and I dont notice it and other times if feels like it is on fire. I am on here tonight  because I constantly swell up with water retention on my ankles, knees, and hands. I have pain in my neck, shoulders, back etc. I get the headaches as well. I am strict gluten free and also non responsive, I follow a FODMAP diet as well. I just recently started trying to reintroduce things back in my diet. This is the most frustrating disease. I am totally exhausted today and my entire body aches. I just want to hear from other people that may be experiencing the same things. I went through physical therapy for my knee, had MRI's, X-rays etc all for nothing, because it was celiac. I am also having dental issues now as well I have notice that the enamel on my teeth is starting to come off and my gums are very sensitive. I don't know if any of this is celiac related but I would not doubt it. 

Irene Joanne Explorer
Irene Joanne
Posted

Sorry you haven't been well-.its not fun feeling like this. I have some of the water retention problems too. 

I also have lots of problems with pain in neck and shoulders- plus tingling nerve issues down my arms. It's my ulnar nerve rather than carpel tunnel. I think it's related to celiac- the tingling can be a vitamin B deficiency as well. Our symptoms sound very similar. I've only been diagnosed since November 2015- but I've been sick a lot for years. This past year was tough- I was in pain all the time- kind of the sore achy pain you would get from the flu- but much worse. 

I too have dental issues and struggle lots with fatigue. Within a few days of going gluten free I didn't have the awful bloating anymore and the diarrhea was over too- for a few days anyway. I'm pretty sure I need to start taking other foods out of my diet too.  A month after going gluten free- I got really sick from eating Rolo chocolates ( in Canada they are not gluten free) and still haven't recovered from that- now everything I eat makes me feel sick. I had that at the end too before being diagnosed. 

Interesting thing- I've been on a low dose of thyroid meds- now after being gluten free for about six weeks- I'm reacting really badly to the thyroid meds. I guess as my intestines heal- my body is absorbing more of the medication and I'm being overdosed- that's causing chest pain, horrible anxiety, shakiness etc. 

So much to learn!  When I started feeling better a few days into the diet I was pretty optimistic.... But it's been pretty up and down.... More down than up right now?  I'm thinking that the digestion problems will heal faster than the pain in the rest of my body, the thyroid problems and the nerve damage. 

shariberry Newbie
shariberry
Posted

you have to watch your medications as well. your pharmacists will be knowlegeable with that, at least mine is. She knows all of my allergies and medical issues and she will let me know if i am being prescribed something that contains gluten. I just get so tired of aches and pains and swelling and going to the bathroom. I am non responsive celiac even with being extremely careful. i follow a fodmap diet as well. I am not able to have high fructose corn syrup either. I am looking for other peple that are batteling the same thing, so i can chat and get support. I go to therapy as well for anxiety and depression. This disease is very hard to live with and harder to explain to friends and family. Having a year + behind me, I obviously know more but my body aches all the time

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melissa-clyde Newbie
melissa-clyde
Posted
  • Author

hi

 

thank you for all our replies.

So here is the latest, i went to the doc on Monday for the rash on my hand but i totally broke down (embarrassing) and let all loose about my stomach. So the doc looked back at my history as i had been in the summer, bloods clear no gall stones but on the 2nd visit they did poo test and other bloods which i was then told i was told all clear, this was wrong.... I have helicobacter pylori this is a bacterial infection which I have now been given a double dose of antibiotics and anti acid tablets. I was horrified that i wasn't told this back in Sept when i was tested as alot of my suffering could have been avoided. 

 

 

squirmingitch Veteran
squirmingitch
Posted

Melissa, I am so sorry to hear you've been suffering all this time because they goofed up & told you all was negative when it was in fact positive for H. pylori. Shameful. shameful, shameful!

This is why people should always get copies of their lab reports and look them over for yourself so you can question anything that is "off".

I hope you heal quickly & feel much, much better very soon!

manasota Explorer
manasota
Posted

Melissa, that really stinks!!  Something very similar happened to my husband at a major teaching hospital, no less.  I know everybody makes mistakes; but YIKES!  We couldn't believe it when it happened to us either.  It's REALLY unnerving!  Makes you very skeptical of doctors--or anybody.  It messes with your trust of others.  Not a pleasant thing, especially when you need and depend on them.  We had to force ourselves to relax about it and, in the future, to try to double-check stuff as much as we can.  When docs write RX's for us, we check them, literally, several times before we leave the office!  We don't care who may think we're being neurotic.  Tough!

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