Do I Have Enough Symptoms To Pursue Testing?

[beterraba]

Hi!

Since birth I've had issues with food, even when I was being breastfed. My mom said she just kept cutting foods out until she was basically eating fruits and vegetables. I also have had lifelong insomnia. I am now 26.

As a child I had to always bring my own food to pre school and elementary school. I had to avoid milk at all costs, among many other foods. I had diarrhea and stomach cramps constantly. I also had "allergy testing" that pointed to milk, wheat, soy, beef, etc. As I got older I was able to tolerate more, and also was stubborn and ate things anyways.

Now that I am an adult, I continue to have constant gas, frequent BMs, leg cramping, insomnia, bad breath (I have no cavities, and go to the dentist regularly and have great dental health). I eat a very healthy diet full of fruits and veggies, whole grains, plant-based fats, lean meats, etc. I'm at a healthy weight for my height and I'm very active. Otherwise my health is good.

On a grosser note, my BMs aren't necessarily fatty looking, but often (sorry for the TMI) leave behind a trail in the toilet, and require LOTS of wiping of the butt. Also, it seems that there may be some oil that floats around the water, but the poop itself does not float. I go anywhere from 3-7 times a day. It always smells bad, but doesn't poop always smell bad?? hahaha.

I've set up an appointment with my doctor, do you think it's worth mentioning celiac to her? Or maybe I'm just a gassy person??

Thank in advance!

[leadmeastray88]

Yes! Your symptoms could definitely be attributed to Celiac. It's a good idea to rule Celiac out because it can cause all kinds of other problems if left untreated. (i.e. other autoimmune diseases)

You need to ask your doctor for ALL of these blood tests, not one, not some, ALL of them or they won't tell you anything:

-IgA

-IgG

-tTG

-Total IgA

There's no reason why your doc should refuse you this. See what the levels are, and go from there. You should get an endoscopy with biopsy as well. The most important part of all of this is you NEED to be eating a 'regular' amount of gluten until after all testing is complete! No gluten "lite"! The reason you want to get all the testing done is because you don't want to cut gluten out completely and then second guess yourself later if it really is Celiac causing your problems.

After all this is said and done, you can always try the gluten free diet for awhile and see how you feel. Many people here are self-diagnosed gluten intolerant, and are comfortable with that decision.

No matter what you choose to do I hope you feel better soon!

[ang1e0251]

You say you had allergy testing that pointed to wheat. That would be enough for me! Definately get tested now! What you don't want is the kind of internal damage that may lead to a cancer or neurological disease; something a little more serious than oily stool or gas.

[beterraba]

Thank you both very much. I forgot to mention too that my ferritin (iron stores) were very low a few months back, but I'm not technically anemic. I will be sure to address all of this with my physician next week when I see her.

Depending on what she says, I may just do an elimination type diet to see if anything makes me feel any better.

Does anyone know if there is any correlation between celiac and ADD?

[missy'smom]

Here is a checklist of symptoms for you to compare to. It sounds like you have plenty.

Open Original Shared Link

In my experience as a person with celiac disease and having a child with ADHD, I would say that there definitely can be a connection, you'll see some of those symptoms on the checklist too if I remember right. I think there may also be other causes for the attentional diagnosis too. It's really just a set of symptoms without a clearly defined cause. Many have said that addressing allergies, including those other than gluten, have made alot of improvement. Other things like build up of toxins in the system and other health issues can be factors as well. Wheat has come up for you, so I'd start there.

[missy'smom]

Here's another link for you. Open Original Shared Link

[beterraba]

Thanks for all the help. I am planning to go see my PCP on Friday. I've only seen her once, but at that time I really liked her, so hopefully she will listen to me. I suppose if all else fails I could just go gluten free and see if it makes me feel better!!

Along with the ferritin I also had a low Vitamin D, which I just read is also a symptom. But most people are low in Vitamin D anyways.

Again thank you all very much!

[Sesame]

Yes! Your symptoms could definitely be attributed to Celiac. It's a good idea to rule Celiac out because it can cause all kinds of other problems if left untreated. (i.e. other autoimmune diseases)

You need to ask your doctor for ALL of these blood tests, not one, not some, ALL of them or they won't tell you anything:

-IgA

-IgG

-tTG

-Total IgA

There's no reason why your doc should refuse you this. See what the levels are, and go from there. You should get an endoscopy with biopsy as well. The most important part of all of this is you NEED to be eating a 'regular' amount of gluten until after all testing is complete! No gluten "lite"! The reason you want to get all the testing done is because you don't want to cut gluten out completely and then second guess yourself later if it really is Celiac causing your problems.

After all this is said and done, you can always try the gluten free diet for awhile and see how you feel. Many people here are self-diagnosed gluten intolerant, and are comfortable with that decision.

No matter what you choose to do I hope you feel better soon!

Hi leadmeastray88, I just read your post and now I am concerned that my test might have been a false negative. I was recently (actually just last week) tested for Celiac. The test came back negative, but I haven't been eating wheat for 4 months prior. I had been talking to my daughters friend who does have Celiac and we were dicussing symptoms. I was amazed that his symptoms mimicked mine. So on my own I just stopped eating wheat to see if it would make a difference. Amazingly enough all of my symptoms went away, so I just stuck to it. I then just decided to have the antibody test just to find out for sure. I had explained all of this to my doctor prior to the test and she said the antibody test would still work. Now I am concerned, should I be?

Sesame

[ang1e0251]

The antibody test will not likely show positive when you are not eating gluten. Your dr should have known that but many don't. But even if you are eating wheat, false negatives are common. If you choose to test again, you must be actively eating wheat some dr's require 3 months time elapse.

[Sesame]

The antibody test will not likely show positive when you are not eating gluten. Your dr should have known that but many don't. But even if you are eating wheat, false negatives are common. If you choose to test again, you must be actively eating wheat some dr's require 3 months time elapse.

Thank you for responding ang1e0251, it's been quite a conundrum for me. I am scheduled for a colonoscopy next month, hopefully they'll be able to determine something from that. I don't think I could go back to eating wheat as my symptoms had become so severe it had become quite a challenge just leaving the house. So I guess my next question is can I still be diagnosed by having the colonoscopy without eating wheat or will not eating wheat and gluten products affect that test too?

[Fiddle-Faddle]

A colonoscopy will NOT diagnose celiac, as it is to examine the colon. Celiac is seen in the villi lining the intestines, which are viewed during an endoscopy.

That doesn't mean you shouldn't get a colonoscopy, especially if you are over 50. And if you've had years of intestinal problems, a colonoscopy might be valuable anyway, at least as a baseline.

Your doctor is very wrong about the antibody test being valid after 4 months gluten-free. Why would she think you'd be making antibodies to something that you're not eating (and therefore not exposed to) ?!?!