Newly Diagnosed Celiac

[kdskaggs]

Hi,

My name is Kenda and am the mother of 12-year old Morgan. Morgan has always been what I have called a stomach achy kind of gal. She is very hard on herself and demands perfection so we assumed, as did her doctor, that she was reacting to stress. Morgan does not have a distended stomach, diarhhea, constipation, funny looking poop or any other common symptoms of celiac disease, except that she does have a lot of stomach aches which have increased in frequency. She also has dark circles under her eyes. She was very colicky as an infant, despite being breast fed for the first 8 months of her life. I was very careful about my diet but it didn't seem to help.

I had her at our pediatrician's office last week because of increased stomach aches. She was tested for celiac disease. Her results are as follows:

(tTG) Ab, IgG 7

(tTG) Ab, IgA 35

Gliadin Ab IgA 15

IgA, serum 132

Can anyone here please interpret them for me?

Our pediatrican is out sick and we have not been able to discuss this with him but an associate of his considers this to be a positive test and has referred us to a pediatric gastro, whom we have not yet seen. My understanding is that the gastro will want to do a biopsy but I question whether it is necessary. My question is why do it? If the treatment for her is the same either way, why put her through the endoscopy? I have had one and know they aren't any fun. Also, her labs don't seem that bad, compared to some I have read here. Are these numbers conclusive for celiac disease?

I understand that celiac is herditary. Does this mean that either my husband or I, or both of us, have it? I was diagnosed with pancreatitis over a year ago after a major pancreatic attack which seemingly came out of the blue. I had mildly elevated liver enzymes for a couple of years but no symptoms. I have read that pancreatitis is sometimes caused by celiac disease. I do not drink alcohol, the typical cause of pacreatitis. I was also diagosed several years ago with fibromyalgia but have beaten it with the help of a naturopath and have Interstitial Cystitis. According to my ND, I have a weak immune system and am now wondering if I have celiac disease.

This website has been so helpful. I have spent hours here and have learned so much.

Thank you.

Kenda

[Boojca]

Well, I can tell you that the TTG level is anything under 30 is considered normal...and hers is 35, so definitely not normal. Sounds like celiac disease to me, honestly. As for the endoscopy, my son had one and they knocked him out totally (he was 2 1/2 at the time) so I see no reason why they couldn't do that for her as well. And he was GREAT when he woke up...in fact immediately asked for McDonald's which we had and he was fine.

As for you, just bc she has it does not mean that you OR your husband definitely have it, but you should both be tested to be sure (many Celiacs show no symptoms) My husband and I were both tested, and both tested negative. It definitely comes from somewhere in the family, but it can easily "skip a generation" so to speak. And, if you have other children they should be tested too even if they dont' show symptoms. And, again, they may hve it or they may not. But I think they should be tested again later in life as celiac disease usually rears it's head after a "tramatic" event (ie, illness, pregnancy, etc...) as do many autoimmune disorders. If your children have other autoimmune disorders (eczema, asthma, etc..) then they should be monitored as well bc people with one AD are more susceptible to develop others.

Bridget

[hapi2bgf]

I would give your child some dicision making power over the endoscopy. Stool tests are an option too.

Sorry, cant help with the blood results.

Good luck

[kdskaggs]

Thank you for your help!!

I made an appointment today with the recommended ped. gastro. Unfortunately they are booking for the end of April! I started her on the gluten-free diet a few days ago and already she feels better. I made some gluten-free brownies yesterday and was shocked at how good they are. Definitely not low fat but very good. I also made her a gluten-free pizza and it was very good as well. I am thrilled that we have a Wild Oats in our town, it makes cooking normally for her so much easier. I ordered three gluten-free cookbooks from Amazon and they should be here today as well. I wanted gluten-free bread recipes and desserts especially. She misses both.

As for me, I'll be tested but if I have it, I consider myself asymptomatic. Other than the pancreatitis attack, I don't have any symptoms. My sister and mother, on the other hand, do seem to have symptoms so they may get themselves tested. My husband and son are next, both needlephobic. If I have the genetic test, if it is positive, could that mean that I am simply a carrier and not actually have celiac?

As for the biopsy, I know they aren't painful since I had one following my pancreatitis attack, I just don't really see a need to do it, unless I'm missing something here. She is already on the gluten-free diet, feeling better, and the gastro can't see her for 3 months. Since I'd have to reintroduce her to gluten for the biopsy, it doesn't seem worthwhile, at least at this point. She doesn't want to have the biopsy. I promised her that I would have it done only if it was necessary, but that it would be done if the doc said it should be.

Do you know what the different levels in the blood indicate? Does a higher level indicate a worse celiac? I sure wish I could see the gastro sooner, I have so many questions.

Thanks again for your help!

Kenda

[flagbabyds]

I would say that it is totally up to your daughter about wheather to have the biopsy or not. She is old enough to make her own decesions. She needs to be given control over her life and her diet, and also if you have already put her on gluten free then there is really no point in seeing the gastro because therre won't be much that he can do for her because she is already on the diet. The doc will either make her go off the diet and do the biopsy or else just say that she is doing fine and should stay on the diet, so it won't do much good anyway.

I don't know much about the blood numbers, all the test changed since i was diagnosed( 14 years ago) and there is much debate what a border line celiac is. If she feels better on the deist then that is a test within itself, keep her on it and if she starts regressing then go to the gastro, she didn't seem like the celiac had gotten to the extreme cases like a lot of other peoples which is good, you caught it early and you defenitly had a good doctor who knew how to diagnosis it. YOu don't need another doctor to tell you what is wrong with you and what you can't eat, even if you already know that.

She can e-mail me if she wants Open Original Shared Link

[kdskaggs]

Thank you so much, Molly. You have affirmed what I already thought about the biopsy. I was expecting the gastro to tell me to take her off the diet for a biopsy and that sounded insane to me. Why stir up the symptoms unnecessarily when she is doing so well. She is thrilled that the gluten-free foods are so tasty and is even more thrilled to finally feel better.

As far as Morgan being old enough to decide about the biopsy on her own, I don't really agree. Had it been up to her, they would have never taken her blood for the celiac test to begin with. To make matters worse, she fainted in my arms afterward. If she had it her way, she'd ever see the doc again.

Thank you for your email address. If Morgan has any questions, I'll have her contact you.

Kenda

[Boojca]

Just so you know, by going gluten-free before the Biopsy the biopsy will probably come back negative for Celiac. You must be consuming gluten for several weeks prior to the biopsy in order for it to be a "true" measure. So, if she's going gluten-free now it's not even worth doing it. I would talk to your doctor, tell them what you are doing, and see if there isn't someway they can bump it up so she can be consuming gluten for a shorter period of time and not suffer so long....or tell them to forget it.

Bridget

[Boojca]

I should have read your whole post before writing my last message. As for the "numbers" higher or lower, it's like being pregnant: you either have Celiac or you don't. There is no degree of celiacness ;-) And I'm not even so sure if the higher the number the more damage that has been done bc my sons TTG test came back at 250 (with anything under 30 being normal...so as you see, we were pretty sure he had celiac disease) and within days of going gluten-free he was back to his old personality and he started gaining weight almost immediately (gained 5 lbs in a month!)

If you are looking for a great site with LOTS of recipes and product recommendations, etc... try the Celiac Support Group at Delphi Forums. I have received so many recipes there it's amazing. I am starting to wonder why I even bought any cookbooks!!! I can tell you that for my son (he's 3) I make Bette Hagman's Tapioca Bread (it's in the Gluten Free Gourmet Living Well Without Wheat revised edition) and we all love it. And to make Chicken nuggets JUST like McDonald's (not healthy, I know, but hey, you gotta live a little right!?) I use ground chicken (yes, like hamburger only chicken) and form them into little balls. Roll it in egg, then in crushed up Lay's plain potato chips. Put them on a baking sheet and flatten, then bake at 350 for 20 minutes. Walla. Yummy nuggets. and they freeze and reheat great too! This recipe comes from Melonie at the SillyYaks board (she's on Delphi too.)

[kdskaggs]

Thank you, Boojca! I'll have to ask the doc what the numbers really mean. Since our pediatrician sent her to a gastro and told me that she does have celiac, I figured it was like pregnancy.

I'll keep your chicken nuggets recipe. I'm sure Morgan will want "normal" food at some point. Right now, she is really enjoying the gluten-free brownies and cookies.

Where do I find the Delphi list you mention?

Thank you for your kind help!

Kenda

[Boojca]

You can check out the Celiac forum at www.delphiforums.com I think you look under health & wellness or something like that, and Celiac is one of the first in the list. If all else fails, search for Celiac. It's a GREAT list. I still check this one, obviously, but I do Delphi daily...several times a day, actually. ;-)

B