New Celiac-overwhelmed

[JessicaL]

I have been reading the boards for a while now (since july) but just now have decided to pipe in after my biopsy, which the GI said the damage was sufficent enough to be seen on the endoscopy, although the final results have not been sent to me. I did also have positive blood work. As I was leaving the GI, he told me that now would be a good time to begin a gluten free diet. I thought, no problem, I've been reading I know what to do.

I came home and panicked! Especilally since the Dr. gave me no info yet. I have been on what I think is gluten-free diet, but I don't really feel anybetter yet. Am I missing something? I've not been eating spices, taking vitamins and have even switched my contact solutiion. My husband noticed that our shampoo has oat protein in it. Does that matter? Could I be missing something else, or does it just take a while to feel better?

My other question is what to do about my son. He has all the signs and symptoms of celiac, but his blood work is only a slightly elevated gliaden, still in the normal range and the endomesium is negative, the GI said maybe it's only food allergies(I wanted to scream) and not celiac. But since I've been on a gluten-free diet his belly has gone way down, is this a sign that he's also responding to the gluten-free diet? Should I request a biopsy even with this blood work, What should I do?

Thanks to all who use these message boards, they have helped me soooo much.

Sincerely, Jessica

[Canadian Karen]

Hi Jessica! Welcome to the board!

Yes, it can take some time before you start to see the results of the gluten-free diet. Some people notice a positive change after a few days, others take months to start to feel better. It depends not only on the amount of damage done to your system that needs to be repaired, but also how vigilant you are. Have you taken the precautions of getting your own cooking pots, utensils, toaster, and other cross-contamination issues? Or is your house going completely gluten-free?

Also, regarding your son, I am a bit confused. How old is your son? When you say that you going on the gluten-free diet has decreased the bloating in your son, does that mean that he is a baby and you are breastfeeding? Or does that mean that your house is now completely gluten-free and he no longer is getting gluten items..... Keep in mind that testing for young children is not always accurate.....

Any questions you have, just post away! There's a bunch of really great people here who are very knowledgeable and helpful.

Cheers!

Karen

[JessicaL]

Hi Karen, thanks for your response.  My son is two, and since the whole house is going gluten-free (except a few things that my husbad eats that are now on a speerate shelf) he has consumed I would guess almost none.  But will this affect further testing? 

AS far as our house, I have gotten gluten-free wooden spoons, do I need forks and knives and pots and pans too?  We do have  a gluten-free toaster oven and have decided not to even have nonGF bread in the house.

Have you encountered rude custome service people when calling about gluten-free items.  I called the Biotics Research(a vitamin co) and the lady was so uneducated and RUDE!~  Uggg, I couldn't believe it! 

Do you ever get into a good groove with the gluten-free thing? 

Hi Jessica!  Welcome to the board!

Yes, it can take some time before you start to see the results of the gluten-free diet.  Some people notice a positive change after a few days, others take months to start to feel better.  It depends not only on the amount of damage done to your system that needs to be repaired, but also how vigilant you are.  Have you taken the precautions of getting your own cooking pots, utensils, toaster, and other cross-contamination issues?  Or is your house going completely gluten-free?

Also, regarding your son, I am a bit confused.  How old is your son?  When you say that you going on the gluten-free diet has decreased the bloating in your son, does that mean that he is a baby and you are breastfeeding?  Or does that mean that your house is now completely gluten-free and he no longer is getting gluten items.....  Keep in mind that testing for young children is not always accurate.....

Any questions you have, just post away!  There's a bunch of really great people here who are very knowledgeable and helpful.

Cheers!

Karen

<{POST_SNAPBACK}>

[Canadian Karen]

Hi Jessica!

Yes, you do get into a groove with this diet. Believe it or not, this diet will become so natural to you that you won't even remember what life was like before going gluten-free!

If your pots and pans are steel, I would think that would be okay. I have heard that teflon and iron skillets absorb gluten though and if you have these, should be replaced.

Have you checked your make up? Also, any over the counter medicines you take. I made the mistake of taking Gax-X Chewable Tablets, which are NOT gluten free. I was eating those things like candy for my gas and they had gluten in them the whole time! Also, remember not to lick any envelopes or stamps also as the glue in them sometimes contains gluten.

We have all encountered not only the rudeness, but the ignorance of people in regards to celiac disease. Don't worry, you get used to it. Also, by the way the diagnoses of celiac disease are exploding, I am fervently hoping that the general public will become more and more aware and the ignorance will become less and less.

If your son is not longer consuming gluten, any tests done from here on in will not be accurate. But just the fact that he has had some positive response to the gluten free diet would be enough for me as a parent to recognize that it probably is celiac........

Cheers!

Karen