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AdamJ

Newly Diagnosed - Unsure if symptoms related?

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Hey all,

 

Newly diagnosed Celiac, my mother had it as well so it seems I won the genetic lottery (Wohoo!)
I'm a little on the scared side as my mom wasn't diagnosed until it was much too late and hers advanced her into liver disease, then cirrhosis of the liver which lead to her passing.

That being said, I have a bunch of symptoms - I'm unsure if related to Celiac disease.

Current Symptoms: (I know these sound like GERD, However I've never had acid come up or taste it)
Shortness of breath
Strange taste in mouth (Kind of tastes like an infection, a little sweet)
Dry Cough
Tenderness to the touch near my intestines
Occasionally I get the frequent urge to urinate (this may have been due to apple cider vinegar pills I was taking - testing this out)

 

What made me go in to see the doctor in the first place was the nagging cough - That's when we did bloodwork and found my tTG-IgA was sitting at 19.8. We later confirmed physically last week as well.
I've been gluten free (I think, it's kind of hard to tell with what to eat) for 5 days. 

Something I've noticed with these symptoms is that in the morning after sleeping, if I don't eat or drink anything these symptoms dont really emerge. It's only when I eat or drink anything other than water
I start to act up.

Could this possibly be a response to gluten I'm accidentally ingesting? Is this possibly an effect my body attempting to get used to not being gluten free? I really have no idea
What's happening, the shortness of breath is worrying me. I also had a chest X-Ray and the doctor said it looked clear, however he mentioned my liver enzymes were a bit high. I'll be
Getting tested for possibly fatty liver disease shortly.

FYI - I'm 30 years old & Male and a little overweight, not classified as obese.
 

 


 

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Welcome to the forum! 

Celiac Disease has over 300 different symptoms of which you can have any combination.  Talk about winning the lottery!  

The sweet infection taste makes me think of Small Intestinal Bacterial Overgrowth (SIBO) which can occur with Celiac Disease.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/

SIBO is also associated with liver problems.

https://www.ncbi.nlm.nih.gov/pubmed/27308646

I had fatty liver disease and SIBO.  I adopted the AutoImmune (Paleo) Protocol (AIP) diet and my health has improved greatly.  The AIP diet starves off the SIBO organisms and beneficial bacteria take over.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

If you are consuming products made with high fructose corn syrup, stop!  High fructose corn syrup (HFCS) must be processed through the liver, just like alcohol, which can lead to non alcoholic fatty liver disease.  The liver needs thiamine, Vitamin B1, to process high fructose corn syrup into glucose which the body can use for energy.  Without enough thiamine, the liver can't make make that conversion and stores the HFCS as fat in the liver.  

The liver doesn't have enough thiamine because the SIBO bacteria prevent its absorption or use it up themselves.  SIBO can cause malabsorption and vitamin deficiencies.  Checking for nutritional deficiencies is part of follow up care for Celiacs.  Check with your doctor about supplementing vitamins and minerals.

Try keeping a food/mood/pooed journal to help pinpoint problematic foods.  It's also helpful to share this with a dietician or nutritionist.

Keep us posted on your progress along your new Celiac journey.

Hope this helps!  

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14 minutes ago, knitty kitty said:

Welcome to the forum! 

Celiac Disease has over 300 different symptoms of which you can have any combination.  Talk about winning the lottery!  

The sweet infection taste makes me think of Small Intestinal Bacterial Overgrowth (SIBO) which can occur with Celiac Disease.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/

SIBO is also associated with liver problems.

https://www.ncbi.nlm.nih.gov/pubmed/27308646

I had fatty liver disease and SIBO.  I adopted the AutoImmune (Paleo) Protocol (AIP) diet and my health has improved greatly.  The AIP diet starves off the SIBO organisms and beneficial bacteria take over.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5647120/

If you are consuming products made with high fructose corn syrup, stop!  High fructose corn syrup (HFCS) must be processed through the liver, just like alcohol, which can lead to non alcoholic fatty liver disease.  The liver needs thiamine, Vitamin B1, to process high fructose corn syrup into glucose which the body can use for energy.  Without enough thiamine, the liver can't make make that conversion and stores the HFCS as fat in the liver.  

The liver doesn't have enough thiamine because the SIBO bacteria prevent its absorption or use it up themselves.  SIBO can cause malabsorption and vitamin deficiencies.  Checking for nutritional deficiencies is part of follow up care for Celiacs.  Check with your doctor about supplementing vitamins and minerals.

Try keeping a food/mood/pooed journal to help pinpoint problematic foods.  It's also helpful to share this with a dietician or nutritionist.

Keep us posted on your progress along your new Celiac journey.

Hope this helps!  

Thank you Knitty! This is SO helpful, I'm definitely going to switch to Paleo & AIP asap. 
I read that fatty liver disease can be reversible, were you able to accomplish that?

This is a lot more information than I was expecting, hours of googling and I didn't find any of this.

Thank you!! 

Edited by AdamJ

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Yes, I did reverse my fatty liver!  I had been very ill, and much was due to malnutrition.  Newly diagnosed Celiacs are often low in many vitamins and minerals.  Be sure to discuss supplementing with your doctor.  Correcting deficiencies in Vitamin D and magnesium can help, too.

https://www.ncbi.nlm.nih.gov/pubmed/29480918

Kitty

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Thank you so much! I feel much better knowing that this can be greatly improved! My ALT levels were showing 61 - I believe normal is 50? Hoping I can improve those numbers

 

I'm taking cocktail of vitamins as well as drinking green tea/coffee & adopting AIP diet.

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My ballerina niece had a fatty liver.  She gave up all soda, and greatly reduced sugary foods (e.g. candy, cookies, etc).  In a year her liver was fine, when her PCP retested her.    (She does not have celiac disease — just a sweet tooth.)

Many celiacs who are actively flaring, have liver issues that often resolve once they heal from celiac disease.  

Edited by cyclinglady

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Wow, just a few days on AIP and my cough that was with me for a month has almost vanished and the strange taste in my mouth is gone completely.
Thank you SO much. This was way better than the advice I received from my doctor.

It's strange to think I've been essentially slowly poisoning myself.

Appreciated - I'll update on my next bloodwork!

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