Came Here For Son, But Am I Celiac Too?

[missquarejane]

my 15 month old son stopped really growing at all around the 6 to 8 month stage, suffered horrible GERD from 8 weeks of age on. no hair and lonnnnng eyelashes. doctors finally suggested celiac around 10 months and since being pulled from any trace of gluten, he has finally begun to grow again. i came to the msg board here looking for info and support for him, but now i am beginning to think that i need to be tested too. all the reading here has me putting two and two together... it all adds up.

i was a bald baby with super long eyelashes and of irish and brittish decent. collic and irritability from 3 mos (when my mom introduced formula). i have a history of severe rash as a child, occasional random outbursts of hives as an adult. chronic nagging sinusitis and post nasal drip that never clears, occasional migranes, chronic headaches, irritability and or moodiness and or depression in bouts for no aparent reason. i have also had asthma and allergies ever since i was 6 mos old. at one year, i was the size of a 6 month old and now am only 4'11''.

4 years ago i had my appendix removed because i was having such horrible pains in my abdomen and sides off and on... when i eventually went to the hospital, my white blood cell count was through the roof, and on the ultrasound it appeared that i had fluid in my abdominal cavity. the surgeon and specialist weren't certain that it was appendicitis because the appendix itself looked normal on the ultrasound, so they did an old fashioned large incision so that the could poke around and proclaimed diverticulitis. i am only 36.

what do you all think? is it possible i have just been poisoning myself my whole life? i had always assumed that i just came from bad genes with nagging health issues that i was just supposed to deal with. is it really possible that i just need to stop eating the wrong things? and now i wonder about my daughter as well. she also had the tell-tale no hair and long eyelashes, asthma, chronic cough and post nasal drip... and she suffers from bouts of anxiety that are almost uncontrollable. even as an infant she would panic if she wasn't at home. at three, she would flip out if i started the bathtub and left the room while it filled. (not with her in the tub, just she would worry that it would overflow--to the point of screaming). i have recently pulled her off wheat completely.

are there any testing options in canada that are less invasive and more accurate than glutening and blood tests or biopsy? i don't like those options, especially for my son and daughter. is there enterolab here? can you request this type of testing from your md?

[wowzer]

It sure sounds like you could have celiac also. It is genetic, so your son got it from somewhere. If you haven't been gluten free yourself, you could try the blood test. It can have a false negative, but not a false positive. I am in the United States, so I don't know about the entereo lab, I'm sure you could always mail for it.

[psawyer]

The symptoms that you have described are consistent with celiac disease, but are not exclusive to celiac. Most doctors like to see "definitive" evidence. The biopsy showing villous atrophy is definitive. Positive blood results, especially tTG, are very specific.

Those tests look for the reaction to gluten exposure, so the subject must be eating gluten on a regular basis for them to show positive.

Although a majority of doctors don't yet accept it, a positive response to the gluten-free diet can be diagnostic. This is particularly true if you see an improvement, reintroduce gluten, see a decline, eliminate gluten again and see another positive response (this is typically called the "gluten challenge").

I am in Canada. There is nothing comparable to Enterolab here, but if you can send the required material to Enterolab they should be able to do the test. I'm not sure how various transportation companies and US Customs will react to a shipment whose declared content is human excrement

As to yourself, if you are not currently on a gluten-free diet, blood tests should help determine if you have celiac disease.

The celiac panel consists of:

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IgA

Total IGA

Of these, the tTG is the most specific (99%) for celiac. Open Original Shared Link

[gfpaperdoll]

I am Irish & english, & most of my family has a gluten problem. It sounds to me like you need to be gluten-free. I do not see how anyone that is Irish & English & has any symptoms would not have a gluten problem. You can email Enterolab & see what they say about shipping to & from Canada. I recommend them, because your family might be like mine, all doulbe DQ1 & do not test positive via blood or biopsy until the damage is huge ( & the bad health to go with it) & we are older. It is near impossible to get a positive test on a child or young adult if they have the gluten intolerance gene, except thru Enterolab. That is why we all like them so much, they just saved our life!!!!

[cruelshoes]

All first degree relatives of celiacs should be tested, regardless of symptoms. After I was diagnosed, we had both my kids tested. One was positive - he had NO symptoms, but his degree of damage was almost as severe as mine was. I disagree that it is impossible to get a gold standard diagnosis (bloodwork/biopsy/dietary results) on a child, because we got one on my son. His ttg was sky high, and his villi showed damage on the severe end of the spectrum. He was only 6 at the time, and with the degree of damage he had, we probably could have gotten the diagnosis much sooner if we had known what to look for.

If I were in your shoes, I would definitely get tested, and get my other kids tested as well.

[missquarejane]

wow, thanks so much guys! keep the opinions coming because i need all the info i can get.

the enterolab sounds like the way to go for testing but it is so expensive... especially if there are four of us to be tested and no coverage at all for it.

am i wrong in understanding that for the standard blood work that you must be consuming gluten on a regular basis? this is a problem for my son as there is no way at almost 16 mos and only 20 lbs i am going to gluten him. i am pretty certain that he has celiac.

i have recently removed wheat/gluten from my daughter's diet and mine as well. is it too late to test us? (blood work) is there a link between diverticulitis and celiac too? sorry i have so many questions but like i said, we are new to all of this.

thanks everyone.