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Dr wants me tested for celiac

Rhiannon

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Rhiannon Newbie
Rhiannon
Posted

Hello everyone :)

My name is Rhiannon and I'm 27 years old. Since last October I've been getting chronic hives and last Thursday they got a lot worse. I was put on steroids Friday and today I awoke to a mouth full of painful ulcers and thrush. I'd had ulcers before, now and again, but nothing as bad as this. 

Dr suggested that due to the ulcers, the skin problems, my IBS that I've had for the last five years, my regular random iron deficiencies, crushing exhaustion and my messed up cycle it might be worth testing me for celiac disease. Turns out my grandmother's sister had the disease too. 

Partly excited at maybe finding a reason to these hives. I LIVE off pizza and pasta so a lot will have to change. I'm having the test tomorrow morning - is it weird to be hopeful I have this? At the moment my hives are just "one of those things" with no explanation. The thought of being able to control them fills me with such hope. And like I said, I live off foods high in gluten. Yesterday every meal I ate contained it.

For years I've been back and fourth about my exhaustion and IBS but all my tests have always come back fine for whatever I've been tested for. But today my doctor found I've never been tested for celiac! The idea of being able to make myself feel better after so many years has me so excited

 

Should also add that I have an underactive thyroid and possible rheumatoid arthritis and have had b12 and folate deficiencies too

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Victoria1234 Experienced
Victoria1234
Posted

Just a quick FYI to say there are some great noodle substitutes and you will probably find a pizza that you don't mind either, if you end up with celiac. Good luck and make sure they run the whole celiac panel. I'm sure someone else will jump on to say which tests need to be performed. B)

Ennis-TX Grand Master
Ennis-TX
Posted

Yeah pretty much all of those can be explained by celiac, note it is a life changing disease, there are substitutions for EVERYTHING now days. But for the first 2-6 months you will have to drop all of them and go to a whole foods diet to regulate and clear out your system and boost the healing process, HUGE learning curve and you will have to DEGLUTEN your house cleaning out everything and starting fresh with new cook ware, foods, spices, condiments etc. BUT SOOOOO worth it once you leave a clean and gluten-free life. All the pain, gut, nerve, brain, issues slowly go away as you heal and you start feeling great like your a kid again after the 6 month to 2 year mark depending on damages. Here are some links to look over. BTW you need to keep eating gluten for both the blood test and the endoscope.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

We also suggest you drop dairy for a month or so when you go gluten-free and Oats as they can be quite harsh on your system. I have linked some alternatives to cheeses etc in the list if your going to try this. But again it really is best to do a whole foods diet starting off.

 

 

 

cyclinglady Grand Master
cyclinglady
Posted

These are the tests:

Open Original Shared Link

Try to get the full panel, if you can.  It only takes one positive on any one of the celiac tests, to move forward with an endoscopy.  Keep eating gluten or all celiac tests will be invalid.  

Hives?  I have chronic hives which are managed on a daily cocktail of antihistamines.  Have you tried them?  

Google, but steroids might interfere with the celiac testing.  Be careful:

Open Original Shared Link

Rhiannon Newbie
Rhiannon
Posted
  • Author

Thank you so much everyone! 

At this point just getting an answer would be amazing. I've been sleeping 17 hours a day for five years but tests never pick up anything (aside from my thyroid meds needing altering or one of the random iron deficiencies).

A friend of mine is battling with a much worse allergy problem and has been eating an elimination diet so she'll be able to advise me and show me where to find the best support. Plus I live in a tiny town that has a bunch of health food shops with gluten free anything.

I'm on 180mg of fexofenadine for the hives but recently they have stopped working as well. I have a theory that it might be because after my last iron deficiency I had to take my iron tabs after a meal (or get terrible heartburn) so I went from eating two meals a day to eating four. Most of which would have contained wheat. 

Still eating gluten too. I don't want to do ANYTHING to jepodise this test. I'll only be on the steroids until Friday at the latest so that shouldn't be a problem :)

 

I've been feeling like rubbish for so many years now and it's been steadily getting worse. If this is what is wrong I will be elated

Gemini Experienced
Gemini
Posted

Steroids will interfere with testing so you may have to wait a couple of weeks after stopping them to be tested for Celiac.  All of your health problems can be directly related to Celiac so I think it important for you to be tested. 

FYI....hives can happen just from having autoimmune diseases.  I started having a problem with them about 3 years ago but I have been doing immuno-therapy for my allergies and have noticed the hives problem is improving the longer I am doing that.  I also have Celiac and Hashi's thyroid disease......of which either of the two can cause hives.  I totally understand how frustrating it can be.  I did not go to a doctor about the hives because they really have no clue.  The hives worsened considerably in the past 2 years because I had a lot of emotional upset in my life......my brother and father both died. Now that things have settled down with that and I am not walking around grief stricken most of the time, they have improved and then the allergy treatment seemed to help also. Emotional upset has such a negative impact on your immune system.......I can attest to that! 

Get tested and best of luck!

Fbmb Rising Star
Fbmb
Posted

Getting tested for Celiac is a really easy process. It drives me crazy that people with ongoing GI issues aren't tested, because it's a simple blood test. Compared to other AI disorders it's a breeze. I think it's worth looking into it. I never thought I'd have it and I did. It's overwhelming, but you can still eat like a champ and have Celiac. You may realize you have other intolerances - specifically dairy intolerances, and those may go away. Depending on what you can handle you can still eat all the same kinds of things - you'll just have to adapt. Once you're pretty knowledgeable about the diet you'll know how to modify recipes to be gluten free (like using corn starch as a thickener instead of flour). 

Non-celiac gluten intolerance is also a possibility. DO NOT STOP EATING GLUTEN UNTIL YOU'RE COMPLETELY DONE TESTING. But, if you're negative, it might be worth getting rid of gluten to see how you feel. :) 

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Rhiannon Newbie
Rhiannon
Posted
  • Author

Thank you both <3

It's the morning before my blood test and I don't think I've ever been so excited for one! I've been ill so many years I am so excited there may be an answer. Will try limiting gluten in my diet either way but I'd be so happy to find out what is going on with me!

Continuing to eat gluten for now <3

 

Gemini> Heyyy, another hashimotos, hello!! My partner had immuno therapy for a bee allergy many years ago. He says it was pretty miserable but if it's helpful push on through, eh? :D

So sorry to hear about your Dad and brother. I can't imagine how terrible that must have been for you :(

Emotional upset kinda comes with the territory with me. Been battling OCD, depression and generalized anxiety disorder for the last 10 years and with this hives outbreak my worries are just through the roof!

plumbago Experienced
plumbago
Posted
Quote

was put on steroids Friday and today I awoke to a mouth full of painful ulcers and thrush. I'd had ulcers before, now and again, but nothing as bad as this. 

I wonder if the steroids caused the thrush?

Rhiannon Newbie
Rhiannon
Posted
  • Author

Yeah, dr says it was most likely caused by the steroids. 

Gemini Experienced
Gemini
Posted

Rhiannon.........you may be interested to hear that OCD, anxiety and depression are all things can happen with undiagnosed Celiac.  Seratonin
 is made in the gut and when your gut is compromised from Celiac, then you aren't really producing much seratonin. Many people notice improvement with these issues when they go gluten free and heal.  The gut-brain connection is real!

I, too, was excited about my Celiac blood draw. I mean, ecstatic to think I had finally found the solution to my years of misery.  I was not diagnosed until I was 46 years old so accrued many years of damage.  However, 12 years later, I am doing well and feel much better than I did in my thirties so if you do have it, and it sounds like you really may, keep that positive outlook because the gluten-free diet is not nearly as bad as some people say.  There have only been a couple of things that I could not duplicate gluten-free but everything else I do a great gluten free version of.  What you lose is convenience, not great tasting food.  When you start healing and realize how many symptoms were related to Celiac, it will blow your mind.  I would highly suggest trialing a gluten-free diet even if testing doesn't give you all the answers you seek. Many times, people notice a huge difference, positive testing or not.

Thank you for your kind words about my father and brother. It was horrible and that is when my hives really became bad.  Not surprising, really. But, with time, that acceptance comes around and you deal with it better.  I still miss them terribly but it does get easier. I am just glad the hives are going away because they are a major pain in the ass and doctor's don't help much.

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