Suspicious of Celiac

[SuperTired]

Long read......Hi, I’m seeking some guidance here because I’m suspicious that I have at least a gluten intolerance because of constipation, bloating, tiredness, and hives.  Here’s some background: 

I’m 18 years old. When I was 16, I started suffering from chronic hives that seemed to have no cause. We changed soaps, detergents, medicines, avoided allergens, etc, but I only got worse. I had extensive blood work which turned out normal in every area and eventually was sent to a counselor and put on Prozac (unrelated) for anxiety. After awhile, I just assumed the hives were caused by stress. I’ve had hives nearly every day since. 

3-4 months ago, I had horrible sore throats that resembled strep. I developed horrible exhaustion to the point where I nearly fell asleep in class and took naps every day, which I never could do, and went to bed at 9:30-10. The strep tests came back negative twice, and eventually I was tested for mono which also came back negative. Soon after, I developed random bouts of canker sores all over my tongue, lips, and cheeks. Once one went away, another would develop. Now, I get them all over my tonsils as well, and I have pimple-like bumps in the back of my throat.

I went gluten free for a week and the hives went away completely.

I saw my doctor after this and explained the sores, hives, and exhaustion, and she shrugged all of it off, saying I needed to “eat better” because it would fix all of it. She would not test me for any conditions (celiac, hypothyroidism, Hashimoto’s, deficiencies, etc) and said I shouldn’t go into college self diagnosing myself with something I don’t have. 

I’ve reintroduced gluten and for two weeks I was fine, but lately I’ve been sleeping up to 12 hours at night and then taking 4-5 hour naps during the day. All I do anymore is sleep and I feel like it’s actuallyruining my life, on top of the horrible mouth sores!!

How can I be tested? Do you have any ideas what the problem might be? 

[Ennis-TX]

It could be many things, I have heard the canker sores before from others, I recall highschool and college sleeping most days, chugging energy drinks and hardly being able to stay awake myself. Random bouts of anxiety, constipation, etc.
To rule out Celiac I would a new doctor, and go inquire about the testing for it, you can read up here on it Open Original Shared Link

 

The tired all the time is a combination with celiac of vitamin/mineral deficiencies from damaged intestines and your immune system always fighting a war. The B-vitamins deficiency leads to the anxiety and eventually other nerve issues. This is combo with magnesium leading to stress, anxiety, muscle fatigue, constipation, etc. Iron can also lead to being tired and is another one we end up with issues with.
Supplementing can help bring a bit more regularity to life in the mean time, as you will have to keep eating gluten daily til testing is done. I use Liquid Health Energy & Stress, and Neurological Support 1 tbsp each 3 times a day.
Natural Vitality Calm Magnesium dosed to tolerance (start 1/4tsp [1-2g] a day and up it that much each day til you get loose stools then back it back down)
I use pea protein for my iron, but red meats and taking vitamin C supplements to boost absorption will help better (vitamin C is needed to use it) Ester C makes a low acid vitamin C that is easy on the stomach.

Keep a food diary in also in the mean time, with your symptoms and what you eat. Might help to show to a doctor. If you end up testing negative you have proven that gluten is a trigger so you could have another AI issue or just be NCGI (Non Celiac Gluten Intolerant) in which case the diet would still have to be followed to live normally.

[tessa25]

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten daily for 12 weeks before the blood test. A positive on any one blood test should lead to a gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.

 

You should make an appointment with a gastroenterologist to get the full celiac panel done. Say that when you make the appointment. Give them the list of tests and say they can test for other things as well, but that full list must be run.

[GFinDC]

Hi,

You might want to search for a celiac support group in your area.  Then ask them if they know any good local doctors for celiac disease.  Part of the testing should be vitamin and mineral levels.