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jcgirl

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jcgirl Apprentice

Hello everyone. I have been reading alot on this site for two months now and want to thank everyone for all the great information. I have been suffering with symptoms for over ten years now and have been told that I had IBS, then it was colitis, then Inflamitory bowel disease and then back to IBS. My GI doctor did one blood test for celiac, Anti-Gliadin and said I did not have celiac. However he told me to stop eating breads and pastas. In frustrastion I began researching on the internet and for the first time heard about celiac. I have been gluten-free for 6 weeks and feel 98% better. The bloating which made me look as though I was 6 months pregnant has gone away, I have normal BM's, back and joint pain gone. I have had several broken bones over the years and would joke that I should tatoo fragile on my head.

My 12 year old son has diarrhea alot, acid reflux and vomits quite often. He has not lost weight, on the contrary he has gained and it also seems as though the kid is always hungry. He also gets unexplained recurring boils on his skin which were staph infections. He has an appointment with the pediatrician tomorrow and I am going to ask him to order blood work to screen for gluten intolorance. My main concern is getting the proper diagnosis for my son so that he doesn't have to go through the pain and discomfort that I have. Any advise would be greatly appreciated.


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Ruth Enthusiast

Ask the pediatrician for a full celiac panel blood test. If you can get a referal to a pediatric gastroenterololgist that is even better. The gastros are the only doctors I have come in contact with that know about celiac....I feel like I am educating the pediatrician on it sometimes.

Good luck!

Carriefaith Enthusiast
My GI doctor did one blood test for celiac, Anti-Gliadin and said I did not have celiac. However he told me to stop eating breads and pastas.

That is sort of suspisious, I think. Why would he/she tell you to stop eating bread if nothing was wrong with the test. Did you ask for the number on your test result?

The bloating which made me look as though I was 6 months pregnant

lol :lol: I can so relate to that. It's embarressing!

jcgirl Apprentice

My husband is at the doctor now with my son armed with a list of symptoms and blood work that I want done.

I too thought it was suspicious that my GI told me to stay away from breads and pasta. Just the other day I ate scalloped potatoes. My husband read the label and said there was no wheat. Well low and behold I bloated (my potatoe baby) and had a terrible stomach ache all night long not to mention running to the bathroom. I dug out the box and it contained modified food starch. I am guessing that is the culprit. I am still very new to deciphering labels but now have a good and bad list on the frig.

KaitiUSA Enthusiast

jcgirl-What brand of potatoes were they?

Do you have a list of safe and forbidden foods for celiacs?

jcgirl Apprentice

Kaiti,

It was a Wal-Mart brand box mix, you know the kind with the powered cheese. It was probably not a very good idea to eat it at all. From now on I will make it from scratch. It is tuff with both my husband and myself working and then going home to my son and four step children to feed, etc. I have been eating fresh fruit, vegi's and meat. Hoping to expanc the diet a bit more. I printed the lists from this site yesterday and posted on my refrigerator.

Laurie

KaitiUSA Enthusiast

Laurie,

yeah bad idea without checking to see if it was gluten free. Most likely it had gluten in it if you got that kind of reaction. If you are looking for like boxes of potatoes to mix up Betty Crocker is a good brand. They are manufactured by General Mills which won't hide anything :D They are like a Kraft brand.

Thats good you have the lists that will help with a general guideline :D


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jcgirl Apprentice

Kaiti,

Thanks for the heads up on Betty Crocker. My son also noticed that Wegman's brands list gluten-free right on the products. That makes shopping easier.

Medaka,

I did not ask for the numbers on my test, but I am going too now not that I will know what it means. I will post those numbers here.

Carriefaith Enthusiast

That's great, I'm sure we will be able to interpret them for you.

jcgirl Apprentice

I can't believe this, what a relief. My husband told the pediatrician that I was diognosed with celiac after the doctor said that I told him I had gerd. As mentioned before I have not gotton a diagnosis of celiac disease from a doctor. Anyway the pediatrician read my list of symptoms that my son has had and said it does sound like celiac. He ordered all the blood tests that I had written down (from this site) and the results should be back in five days. I am relieved that the peditrician took us seriously and is testing him.

KaitiUSA Enthusiast

That is great that the doctor listened :D I hope things work out well

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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