Brainstorming, Help Me Sort Through Potential Clues

[brendab]

Ok, so I am on the verge of taking my son to the doc on the 27th to discuss his possible celiac, definitely intolerance and I know I am at least intolerant. I'm concerned about not being properly diagnosed with Celiac's if we are at all. I want to know the benefits and pitfalls of a diagnosis.

My 2 year old son has always had GI issues and with suspicious yellow, mothball smelling poo. I won't recap because I have already posted a long post with pics in another thread. I'm taking him to the ped. on the 27th to discuss whether I ought to take him to a GI doc or not for testing. He's been off of gluten for about 18 months so I doubt any test would show up positive for him for proper diagnosis and I don't want to put him back on just to make it positive but I need to know if having a diagnosis would be worth it for anything? Does he need proof for anything in life? I know he's only 2 now but what about later, when he's older?

For me, here are my thoughs for myself: I was adopted when I was five years old and my mom (adoptive) described me as being the size of a 2 year old, weighing only 26 pounds. I still have my first Christmas dress from after my adoption and the size on it is 2T. No kidding! She also described me as looking like a starving Ethiopian child: big belly, small body everywhere else and my hair would fall out in clumps. I was a very picky eater when I was very young but started eating most everything as I grew up. Now, I don't recall too many sickly days but I would have many times where I would feel cramping and I dismissed it as anxiety while waiting for the bus in the morning and I had to run to use the toilet then I seemed to be fine after that. I don't recall stomach cramping or pains. As an adult, in retrospect and after learning much here I am finding I have symptoms in common with many of you and have gone gluten-free then trialed it to find stomach pain, gas and constipation as the physical symptoms. I am getting headaches, brain fog, general stupor, anxiety, etc. Now, I just had a baby 5 months ago and my hair is falling out BAD! I know some is normal but I don't recall after my last 5 babies having THIS much falling out. This could be nothing. I've been off of gluten off and on for years, this past time I've been off for 3 months and trialed wheat with my baby (she has other delayed allergies and I was doing an elimination diet for her) and so I brought wheat back into my diet to find the poor baby had gas and D, then I am having my stomach pain, intestinal discomfort, C and BAD gas!!!! I'm not wanting to go back on gluten because it involves my nursling but may consider it after weaning but that will not be for a long time as she's only 5 months now.

Oh gosh, what am I missing? My main concern right now is my 2 year old son. I forgot to mention he has a huge belly with what we joke around about a crack up the back. It's hereditary for the men on my husbands side of the family to look like this but now I wonder if it's just physical genetics for something more?

I know I have more thoughts but cannot recall them, I have to get kids to camp but will be back!

[mommida]

For your general peace of mind, go through testing with the pediatric gastro. There are a few things that can cause the same symptoms as Celiac or gluten intolerance. Some other disorders/diseases can also have a "gluten trigger". It could be possible to have a gluten allergy.

If you can find out exactly what you are dealing with you will know if you are doing everything possible for your child's well being.

In my daughter's case she was diagnosed as probable Celiac at 17 months. She was too sick to do the endoscopy with biopsy and was diagnosed with the elevated levels of the Celiac panel and genetic testing (positive for DQ2 and DQ8). Then when she was about 5 and a half years old she started what seemed like gluten reactions that lead to vomitting about 5 times a day like GERD. She was diagnosed with Eosinophilic Esophagitus when she was 6.

[cassP]

YES- as above poster stated- u definitely need to get yourself and kids checked for Celiac, etc....

but also to MAYBE calm your nerves a little (of course u need to get checked- as hair falling out can be a symptom of celiac or thyroid problems)- i ALSO read- that u shed excess hair after having a baby- that while you are pregnant- u dont shed any hair- so your hair seems thicker than normal, and then after having the baby- you shed it all....

[brendab]

But I don't know if putting him through weeks of eating gluten would be the best for him either. I am so confused! Yes, a proper diagnosis would most certainly give me peace of mind as I hate maybe's in life. I don't know what to do. I am hoping his ped. will be able to give me more information.

[Skylark]

Your own symptoms are textbook celiac. I'm a little surprised you weren't diagnosed, as a super-skinny, undersized kid with a big belly and hair falling out is what doctors are taught celiac "should" look like. Don't go back on gluten. You'll just make yourself sick.

Maybe you should look at the genetic testing. It's not diagnostic but if you have symptoms that classic you're likely to have at least one of the major celiac genes and you can look for it in your son.

[brendab]

Your own symptoms are textbook celiac. I'm a little surprised you weren't diagnosed, as a super-skinny, undersized kid with a big belly and hair falling out is what doctors are taught celiac "should" look like. Don't go back on gluten. You'll just make yourself sick.

Maybe you should look at the genetic testing. It's not diagnostic but if you have symptoms that classic you're likely to have at least one of the major celiac genes and you can look for it in your son.

How is that test performed? Can they diagnose my son as Celiac that way so I don't have to purposefully hurt him? (if the genes are there)

I don't recall many visits to the Dr. as a child and I do remember my mother telling me that she took me to the Ped. because I wouldn't eat anything but a few foods and he told her not to worry, it was a phase due to my age. I remember sitting at the table many times trying to eat but my stomach felt off, not necessarily sick but I just remember not wanting to eat. Maybe that is my earliest memory of being sick? I don't know.

[Gardening]

With the clumps of hair faling out post-partum (more so than previous pregnancies) you should get your thyroid checked, too.

[Skylark]

How is that test performed? Can they diagnose my son as Celiac that way so I don't have to purposefully hurt him? (if the genes are there)

I don't recall many visits to the Dr. as a child and I do remember my mother telling me that she took me to the Ped. because I wouldn't eat anything but a few foods and he told her not to worry, it was a phase due to my age. I remember sitting at the table many times trying to eat but my stomach felt off, not necessarily sick but I just remember not wanting to eat. Maybe that is my earliest memory of being sick? I don't know.

The genetic test is not diagnostic. What it does is give you an idea of risk. If you have DQ2 or DQ8 and your son has the same thing, you have pretty good reason to be suspicious that his problems are celiac.

The nice thing about the genetic test is that it's done from a blood sample or cheek swab and does not require you to consume any gluten. The bad thing is that anyone can have celiac, no matter what their DQ genes are, and people with DQ2 and DQ8 don't always have celiac. It's just more common with DQ2 or DQ8. If you and your son turn out not to have DQ2 or DQ8 you won't really learn much.

[brendab]

With the clumps of hair faling out post-partum (more so than previous pregnancies) you should get your thyroid checked, too.

I've had it checked twice with normal results. I'm tired of picking hairs off of my sheets, pillow, brush and clothes.

[brendab]

The genetic test is not diagnostic. What it does is give you an idea of risk. If you have DQ2 or DQ8 and your son has the same thing, you have pretty good reason to be suspicious that his problems are celiac.

The nice thing about the genetic test is that it's done from a blood sample or cheek swab and does not require you to consume any gluten. The bad thing is that anyone can have celiac, no matter what their DQ genes are, and people with DQ2 and DQ8 don't always have celiac. It's just more common with DQ2 or DQ8. If you and your son turn out not to have DQ2 or DQ8 you won't really learn much.

Do we have to visit a GI for this test or can any doc do this test?

[Skylark]

Do we have to visit a GI for this test or can any doc do this test?

If your insurance covers it, any doc can order it. You may find a GI doc more willing, as they're usually a little more familiar with the celiac genetics.

You can also buy the tests yourself, although they usually run $200-$300. Here is an article you might find helpful.

https://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html

[brendab]

If your insurance covers it, any doc can order it. You may find a GI doc more willing, as they're usually a little more familiar with the celiac genetics.

You can also buy the tests yourself, although they usually run $200-$300. Here is an article you might find helpful.

https://www.celiac.com/articles/21567/1/Ten-Facts-About-Celiac-Disease-Genetic-Testing/Page1.html

Thank you for your help! Now I have to wait until the 27th; 2 more weeks! (I hate waiting!)