Do my symptoms add up

[TONTO]

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, 2019 by TONTO

[Jenna1028]

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]

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]

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]

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]

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]

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, 2019 by TONTO

[Corinne D.]

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]

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]

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, 2019 by GFinDC

[TONTO]

Thanks for all the help guys. Just thought I’d touch base since returning home.

My boood test results are as follows:

Deaminated gliadin igg  96u/ml

Tissue transglutimanise Iga <2u/ml

does this sound familiar? Maybe a low gluten intolerance? Just wondering cos I’ve got no idea haha. Since I stopped gluten a few weeks ago I feel much better and, even with a gastroenterologist appt next week am reluctant to start making myself sick again. Is there actually a necessity to have a proper diagnosis? Thanks once again

[Corinne D.]

Tonto, are these your test results from the beginning of November? If yes, were you gluten-free at the time?

You did not give us the lab ranges. The tissue transglutaminase IgA looks negative to me, but I am not sure about the deaminated gliadin IgG.

It's great that you are feeling better! While an official diagnosis is not strictly necessary, it may come in handy in certain cases. For example, if you ever need to be hospitalized, it would be good to have it on file, so that you don't get gluten food or medication.

It is true that a gluten challenge can be problematic if you get sick again, not to mention the ongoing damage it would cause. I guess it would be best to work this out with the gastroenterologist next week.

[TONTO]

Normal 25

Low 25-50

Moderate 51-80

Strong >80 

I don’t think they test for iga ?‍♂️

[Corinne D.]

If these ranges are for deaminated gliadin IgG, then this one is positive and a possible indicator of celiac disease. Although not all celiacs have all antibodies positive, I'm not sure this is enough for your doctor to give a firm celiac diagnosis. Your gastroenterologist will probably want to confirm it is celiac through biopsy. Unfortunately, you would most likely have to be back on gluten for that.

[TONTO]

Yes that was deaminated gliadin igg and i was on a gluten diet when I had those bloods. I had been very unwell for a couple months and my doc was struggling to find an illness till his last attempt at celiac screening. Ok thanks for your advice. It kind of makes sense with how sick I was before and now gluten free I do feel “myself” again. My doc says he thinks celiac disease but he cannot diagnose.  I’ll meet with my gastroenterologist next week but I’m not willing to go back to gluten for Testing just for a diagnosis. Plus the op will be a few thousand dollars.

[Ennis-TX]

10 minutes ago, TONTO said:

Yes that was deaminated gliadin igg and i was on a gluten diet when I had those bloods. I had been very unwell for a couple months and my doc was struggling to find an illness till his last attempt at celiac screening. Ok thanks for your advice. It kind of makes sense with how sick I was before and now gluten free I do feel “myself” again. My doc says he thinks celiac disease but he cannot diagnose.  I’ll meet with my gastroenterologist next week but I’m not willing to go back to gluten for Testing just for a diagnosis. Plus the op will be a few thousand dollars.

Yeah the endoscope and biopsies requires you to be eating gluten for 2 weeks prior. Sounds a bit expensive where you are assuming it is not covered by insurance. Try talking with your doctor, some will put it down officially in your records on blood test and improvement on the gluten free diet alone. This will come in handy say if your hospitalized, or worse case in jail. Also works to help many stick to the diet knowing it was actually causing serious internal damage and understanding the complications that might arise if they cheat.

If your going to take this as a official diagnosis you might do well to go ahead and look at our newbie101 thread to get a base idea about safe/unsafe ingredients and some info on Cross Contamination. IE no eating out unless the place is dedicated/accredited to being gluten free/safe, tossing condiment jars (crumbs inside), scratched pots/pans/cutting boards, colanders, wooden utensils, and anything else that might be harboring gluten residue. In your case might want to understand what beers/alcohols are safe and know that the "gluten removed" beers are not actually safe for us.

[Jenna1028]

I think everyone should get a DNA test. 

Blood tests are not 100% reliable. Not to mention with DNA testing, you learn so many other things about your health. And DNA is the future. Lab work, though useful for many things, does not appear to be as helpful, or as reliable as DNA, with diagnosing so many autoimmune issues. 

I was adopted, so I did the Ancestry.com to find possible family members who also might be searching for me. Then I discovered a site called NutaHacker. You can load your raw DNA, and it will tell you what markers you have. I took that info to my doctor and she was so happy! It proved things we suspected, and ruled out things we weren't sure we should rule out, or not. 

As for blood testing, my results were negative because I already avoid wheat. 

Even my doctor told me this was the best thing I could have done. In addition to the Celiac, we saw that I carry several other markers for various autoimmune diseases, and some are pretty scary. So the idea that I have the power to turn that gene on, or off, through diet, exercise, and supplements - it's so empowering! 

I'm not saying bloodwork and labs aren't useful - they are - they just shouldn't be the only tool used in the tool chest.