Do my symptoms add up

[TONTO 1]

Hi just curious if I might have celiac disease. About 8 weeks ago I had a very stressful life event happen then I randomly noticed my hands and sometimes feet would tingle. Then at work my left side of abdomen would have a dull ache. Gradullay it became a bit more frequent. Then came the worst part which is nausea and tiredness. I can work thru it but I’m just not myself at all. This has been going on for about 8 weeks. I feel like I need to eat lots to make the nausea go away so find myself randomly craving junky fast food options,which normally I never would. After eating I feel a little bit better momentarily but then after a while go back. My muscles ache a bit especially triceps and elbows and bottom of feet a calves. I have constantly got at least two sore spots on my tongue mainly side but sometimes front which is annoying and my throat near Adam’s apple just feels a bit tight and makes me randomly take a bigger breath to catch up sometimes. I’m easily irritable mainly because I just want to feel like my former self but this is just not stopping. I’ll normally have a good night sleep and feel good first thing, then have some breakfast go to work then bang nausea again. I drink a fair amount of beer and have bread in my current diet although my diet is generally quite good and I am not over weight. My stool is either runny or sometimes mild cinstipation it varies but mostly runny. I took endansatron the high made me constipated. Thanks 

Edited November 9 by TONTO

[Jenna1028 3]

You should get tested. Celiac has over 200 symptoms, and each person can present differently. 
 

From my understanding, testing while still consuming some amount of gluten is the best way to detect it. But also some people have been tested and will show negative, even though all their symptoms point to positive. 
 

Does anyone in your family have any auto-immune diseases? 
 

Sorry I couldn’t be more help! I’m new to all this myself  

[TONTO 1]

Hey thanks for the reply! Well I had been going to docs for a while now trying to solve the issue to no avail. I’m currently overseas and recieved an email from my doctor in Aus saying that my initial test for celiac scree has tested positive from bloods I had done last week. I guess it makes sense now with all those symptoms. I still need another gene testing and biopsy tho. Does anyone know if it’s possible that I had a false positive? He’s says the results plus my symptoms are highly suggestive of celiac disease....

[GFinDC 798]

Hi Tonto,

Yes, a false positive is possible, although unlikely.  Please keep eating gluten until all testing is done, including the endoscopy.  Don't worry too much about having celiac disease.  While it's a serious condition it can be controlled with diet, which many conditions cannot.  It turns out there is life after a celiac diagnosis!   Most times a doctor won't diagnose without the endoscopy being done first.

While it may seem overwhelming at first to totally change your way of eating, it becomes ingrained after a while and no big deal.  And the upside is you can likely begin feeling better after a period of healing.

We can give some help with adjusting to celiac and answering questions.  Just throw them at us and see what happens!

[TONTO 1]

Thank you for the reply.. well honestly I’m not that fussed about the dietary change. My go to is generally meat and veg. It’s the beer that’ll be tough haha but I feel like that’s almost the worst thing for me and in hindsight lately it’s been making things worse especially hangovers the next day! I was wondering why they had been so bad lately. As long as I can start to feel myself again I couldn’t care less about changing my diet!

cheers 

[GFinDC 798]

Well, gluten-free beer is available, so no problem there.  It tends to be a little pricey though.  Wine is fine too, although some people have problems with it.  Your meat and veggies diet will do good for you with celiac disease.  Eggs and fruit are ok too.  Many people have trouble with dairy for several months until some healing happens.  But there are almond milks and cashew milks etc that can be used instead.

[TONTO 1]

Thanks for your help guys! Much appreciated!. I’ll let you know how I go. One last thing, I’m in Bali at the moment and have been eating nasi goreng but asking them just to use rice, the veggies, chicken or seafood and the egg. Is this ok? I have asked it to not have the normal soy sauce and peanut sauce they use? Oh and how long till the tongue sores might ease off?

thanks!

Edited November 10 by TONTO

[Corinne D. 1]

Hello Tonto, you were saying you still need to do a biopsy to confirm the diagnosis. Normally, people awaiting an endoscopy to confirm celiac disease are advised to continue to eat gluten until then. Otherwise their gut may heal just enough so that the biopsy results are negative. Has your doctor advised you to already remove gluten from your diet?

[TONTO 1]

I have emailed him for confirmation. In first email he did say that I could choose to cut out gluten if I wished but I still have asked. After all tho time trying to work out the problem I’m glad he found it. It pays to have a reliable thorough doctor. He wouldn’t stop till he found the culprit. I’ll let you know what his recommendations are 👍👍

[GFinDC 798]

On 11/10/2019 at 5:45 AM, TONTO said:

Thanks for your help guys! Much appreciated!. I’ll let you know how I go. One last thing, I’m in Bali at the moment and have been eating nasi goreng but asking them just to use rice, the veggies, chicken or seafood and the egg. Is this ok? I have asked it to not have the normal soy sauce and peanut sauce they use? Oh and how long till the tongue sores might ease off?

thanks!

Hi Tonto,

It's ok to eat gluten for now.  Until the testing is done you shouldn't change your diet.  Except for dairy, you could cut that out without affecting the tests.  Usually soy sauce has gluten in it (wheat) but they do make wheat free versions now.  Unless they use clean pots and pans and understand cross-contamination I wouldn't eat at any restaurant.  Tiny amounts of gluten can get stuck in scratched pots and cause a problem.  You are better off doing all your own cooking at home.  I can't tell you for sure about when the sores will go away.

Edited November 11 by GFinDC