Almost sure I have it

[Lilyofthevaley]

I’m 32 years old and I suffer from digestive, dental and anxiety issues since childhood.

My symptoms got worse every year to the point of always feeling sick. I developed gum disease, lost a few teeth, anxiety disorder, very dry skin, muscle twitches everywhere, no energy, stabbing pains on my tummy, acid reflux, alternated diarrhea and constipation, very noisy guts and gas even in embarrassing moments, constantly burping and not able to gain any muscle mass even lifting heavy at the gym and eating well.

Went once to the hospital with chest pains and after a x ray the doctor told me it was air on my stomach and it could be from a hiatal hernia or a gastritis. I didn’t go for further exames at the time, silly me.

Moved abroad few years later and the doctors just dismiss my digestive issues when I tell it can be from a hernia that I don’t even know if exists.

A few weeks ago I ended up in the hospital again as I couldn’t even bend from the pain. The doctor said my white cells count is high for some time already and gave me antibiotics for a possible infection he couldn’t locate.

After reading a lot,I tried to go gluten free and the stabbing pains disappeared. I'm now a week gluten-free and taking a collagen supplement and feel much better. I'm going to have an appointment this week and ask for further exams but I'm almost sure I'm celiac.

 

 

[trents]

Welcome to the forum, Lilly!

You need to know that if you attempt to eliminate gluten before being tested you will invalidate the tests. The serum tests you are looking at are designed to detect the antibodies produced in response to the inflammation that gluten causes in the small bowel lining (the "villi"). If you eliminate or even significantly cut back on gluten before testing the inflammation will subside and the antibody levels will drop. The Mayo Clinic guidelines before the serum test are the consumption of two slices of wheat bread (or the equivalent) daily for six to eight weeks up to the day of testing. Ask your doctor for a "full celiac panel", not just the tTG-IGA test: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/. If he/she balks at that, insist on the tTG-IGA and the total IGA.

The symptoms you describe are also common to those with NCGS (Non Celiac Gluten Sensitivity) for which there is not ye a test. Celiac disease must first be ruled out. But the antidote is the same. Namely, total abstinence from gluten for life.

[Wheatwacked]

Welcome @Lilyofthevaleyto Celiac.com

I am glad you are feeling better on GFD but sorry to say if you intend to pursue a diagnosis you must continue eating gluten.

Read this from the Merck Manual: Celiac Disease for some background.

This is the treatment for infants up until 1950. The results were good but at the time essential vitamins and minerals were mostly unknown and gliadin as the cause was unknown so once "cured" the patient was returned to a "normal diet". We know now that is not a good idea, but the diet for acute episodes intrigues me. Here is a link to Dr. Haas's case studies submitted in 1924 for publication:

THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE

Albumin milk. Pot cheese (milk 16 oz.).. Banana. Orange. Vegetables. Gelatin. Meat.

I think albumin milk is whey protein and pot cheese is either Farmer's cheese or Cottage cheese.

The key is to get plenty of the essential vitamins and minerals. They are not absorbed well so we need much more than the minimum dietary recommendations to repair our bodies. Vitamin D, Thiamine and Choline are important for anti autoimmune, carbohydrate metabolism and fat metabolism respectively among other jobs. Potassium is poorly absorbed in the small intestine  and more is lost in the colon from diarrhea. 

[Lilyofthevaley]

10 hours ago, Wheatwacked said:

Welcome @Lilyofthevaleyto Celiac.com

I am glad you are feeling better on GFD but sorry to say if you intend to pursue a diagnosis you must continue eating gluten.

Read this from the Merck Manual: Celiac Disease for some background.

This is the treatment for infants up until 1950. The results were good but at the time essential vitamins and minerals were mostly unknown and gliadin as the cause was unknown so once "cured" the patient was returned to a "normal diet". We know now that is not a good idea, but the diet for acute episodes intrigues me. Here is a link to Dr. Haas's case studies submitted in 1924 for publication:

THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE

Albumin milk. Pot cheese (milk 16 oz.).. Banana. Orange. Vegetables. Gelatin. Meat.

I think albumin milk is whey protein and pot cheese is either Farmer's cheese or Cottage cheese.

The key is to get plenty of the essential vitamins and minerals. They are not absorbed well so we need much more than the minimum dietary recommendations to repair our bodies. Vitamin D, Thiamine and Choline are important for anti autoimmune, carbohydrate metabolism and fat metabolism respectively among other jobs. Potassium is poorly absorbed in the small intestine  and more is lost in the colon from diarrhea. 

Hi, thank you for your help.

I decided to go gluten free to make sure it could be the issue but I will eat gluten again once I discuss everything with the doctor and book my tests even thought not very happy to suffer again.

Actually bananas are my comfort food and I use to have them as part of breakfast and snack. For some reason I can’t tolerate dairy very well and I start to have cramps and feel a bit of nausea but still not as bad as the gluten effect. 

I’m currently taking a collagen powder for guts that has probiotics and vitamins included. On the top of it I have a spoon of fish oil. I could include a multivitaminic but will probably discuss that with the doctor and wait for test results as I don’t want to mess up anything.

 

[Lilyofthevaley]

11 hours ago, trents said:

Welcome to the forum, Lilly!

You need to know that if you attempt to eliminate gluten before being tested you will invalidate the tests. The serum tests you are looking at are designed to detect the antibodies produced in response to the inflammation that gluten causes in the small bowel lining (the "villi"). If you eliminate or even significantly cut back on gluten before testing the inflammation will subside and the antibody levels will drop. The Mayo Clinic guidelines before the serum test are the consumption of two slices of wheat bread (or the equivalent) daily for six to eight weeks up to the day of testing. Ask your doctor for a "full celiac panel", not just the tTG-IGA test: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/. If he/she balks at that, insist on the tTG-IGA and the total IGA.

The symptoms you describe are also common to those with NCGS (Non Celiac Gluten Sensitivity) for which there is not ye a test. Celiac disease must first be ruled out. But the antidote is the same. Namely, total abstinence from gluten for life.

Thank you for your help. I will go back on gluten once I have the tests booked. It's a pain but I can probably do it to be diagnosed.

I’m aware it can be a gluten sensitivity but my body seems to be in constant state of inflammation which I think is more a celiac thing. I still have no clue exactly honestly, I just know my symptoms faded with no gluten.