kate12345

I cannot figure out how this place keeps getting recommended by people with Celiac.  People that I know are super careful will eat there.  I was in line one day and I watched them make the food.  They would touch the spoon that was in everything they added to the burritos  that people were getting and sticking it back in there.  I walked out and figured there is just no way that place is safe.  It is such a shame though as it would be a healthy, low risk place to eat if it were not for that.  I was so disappointed when I saw them do that. Jennifer

My daughter, nearly 7 y.o. has been diagnosed Celiacs.  She is gluten free for 6 months now.  She's still complaining, probably every other day, that her tummy hurts!  Her bloodwork came back perfect last time and there were no Celiac markers.  How long does it really take to get out of her system?  Unless she's getting containinated at school, I have no idea why this is still happening?  Any thoughts?

My child kept complaining and the doctor had me give her Lacaid everytime she had diary.  That worked wonders.  We did not have to eliminate it and she no longer has to take it.  She probably took it for 6 months.   Jennifer

My son had wheat allergies show up on his blood work when he was young.  We started testing due to severe stomach pain and oil in the toliet.  The dr only recommended we avoid wheat and see if it got better.  We avoided wheat, not cross containmation.  He continued to have mild symptoms.  He was never checked for celiac.  When his sister got really sick, we found out she had celiac through biopsy.  Both children are on a strict gluten free diet.  We did the genetic testing on him and he has DQ2.5, putting him in the high risk category. 

My question is, do pediatric drs ever diagnosed based on symptoms and genetics?  There  is no way he can eat gluten to do a biopsy.  If it comes to that, he will just not have a formal diagnosis.  Thanks, Jennifer

Thanks for the replies. She is not getting it from other kids or school. It has to be from products or it is something else. They are currently testing her for other things such as allergies and vitamin deficiencies. I hope they figure it out. I was thinking it might be paper cups we were using, but those turned out to be ok. Thanks again.

I think my child is getting gluten from some source, which I cannot figure out. If a product is labeled gluten free such as certain Tostitos corn chips or certain Orieda fries, is it for sure safe? If a product has a gluten free label, does it mean that it could not have gotten cross contaminated in manufacturing??

My animals are on grain free diets, our house is gluten free, but she is exhibiting some of the same symptoms as she did pre-diagnosis.

Are there any great websites for figuring out what it could be?

Thanks, Jennifer

She was having this symptom in Nov when she had the scope done. Would they have seen this or would they have had to look for it?

Are you better off with a food allergist specialist or GI?

How is the best way to bring up the 'idea it could be this' to the dr?

Thank you.

I have a 5 year old with Celiac diagnosed by biopsy 6 months ago. She was completely symptom free but started back up with one symptom she had before diagnosis. It is, what she describes, as her throat squeezing. It is almost like she has spasms in her throat, at least that is what it seems to me. She will sometimes say if feels like food is coming back up or the neck area is sliding. The reg dr does not think it is reflux. I do not either as the meds (Xantac and Prevacid) are not making a difference. The reg dr and GI dr have no idea as to what it is. She is on Prevacid once again. Food allergies are limited to wheat on the allergy testing. I feel confident she is 100% gluten free. Even the animals are gluten free. If anyone recognizes this symptom, please let me know. She was tested for reflux during the endo, but that was neg. Thanks.

Just letting you know that I found Kirkland-Costco- Multisymptom cold medicine for children labelled gluten free. It is the only one I found labelled gluten free and I looked long and hard. I dread it when they need antibiotics as it is so hard to find out if things contain gluten. Jennifer

Does anyone know of a gluten free over the counter medicine cold medicine for kids? Mucinex Mini Melts has been my favorite, but there seems to be some question about it. I wonder if the liquid is the same way. Thanks

So is yours small bowel and transient?

Also, is there not anything you can do about it?

I keep wondering if that transient small intestine intussception could be causing pain, too. But the dr has me told me it would not cause pain. I may need to get a second opinion on that. Her dr is a pediatric GI, so I would hope he would know. I have not eliminated dairy yet, but will start today. I have not read the report, but I know they said she has the blunting of the villi typical with celiac. I am going to try the bland diet thing again and see if that helps. It does not seem to appear to be acidic foods most of the time but everything. It is hard to eliminate dairy and gluten at the same time, but I am to the point where I have to do something and do not have a choice. Her next appt is not til Jan, and they say that is the earliest they have available. Whatever, do they really expect children to remain in pain this long? Most days are tolerable but yesterday was difficult for her as it kept hurting and I had given her everything I could medicine wise. Thanks for the ideas.

I am trying to figure out what to do with my 5 year old. The biopsy came back and she does have celiac. I have had her on gluten free for 11 days. As soon as she starts to eat, she says her stomach hurts. She is on Prevacid, Maalox and Tylenol as it hurts her so much. I only give her Maalox and Tylenol as needed, which is still everyday.

Did any of you experience this? She will say her stomach hurts as soon as she starts eating most times. She points to her belly button area. Can you feel the damage from the small intestine--it that what hurts when she starts eating? I would expect her to be better by now. She does not have significant heartburn, her esophagus looked normal and stomach as well according to GI. I am not sure if I should keep waiting out, or pursue other things it could be, which I have no idea what it could be. I am going to try eliminating dairy now, but not really sure it is the issue. Thanks, Jennifer

Is the playdough ok as long as she washes her hands after she plays with it?

Great. That helps. We just found out today that the biopsy confirmed Celiac. I have a lot of mixed feelings but really glad that I may have found someway to keep her stomach from hurting. Thanks, Jennifer

My 5 year old has been on a gluten free diet probably 10 days now. Only one mistake that I know of happened. She is better but still complaining of stomach pain. It starts as soon as she swallows a bite for most foods. She especially has not liked fruits when all this started. We do not have the results of the biopsy yet. We should get them anytime. When she was a baby, she had blood in her stool, which was eliminated with no dairy products. The dr said that they outgrow that and it is not the problem. I do not know if I should just go to the pediatrician and ask for food allergy testing or ask for an allergist specialist or what.

I do not know if 10 days gluten free is enough to determine if gluten is the cause of pain or not. She had a positive DGP IgG, which led to the biopsy.

Ideas?

Thanks, Jennifer

I should have been clearer. I am the one that has it, not my daughter. I am wondering since they are testing her for celiac, if it may be my problem too. I also have Hashimotos. Cause of POTS was never determined. Lyme was ruled out multiple times. In fact I think everything was ruled out except celiac. I never saw testing for that. I do take a beta blocker, and it helps. But it is a band aid. We are all going gluten free and believe it or not my daughter is already doing much better. It has only been 3 days, is that possible? Every now and then she complains about her stomach but it is nothing like before. She is actually playing by herself again and not as clingy. This would just be a miracle if it would help us all. I read somewhere that if the biopsy turns up neg, and the IgG is positive that it is gluten intolerance.

Funny thing is is that no one is complaining about this gluten free diet or what they can/can't have. Maybe it is too early, but I guess when you get to a certain point health wise, you embrace it.

Thanks, Jennifer

I am wondering since my daughter is in the process of testing, if any of you have been diagnosed with Postural Orothostatic Tachycardia Syndrome? If so, did it get better with a gluten free diet? Thanks, Jennifer

I just got through watching my own suffer and the anesthesia was awful. They had her in those splints so she could not move her arms as she had that ph monitor in her nose. The whole thing is just terrible, especially taking the meds away. It is amazing the kids get this sick over this. If the gluten free diet works for them, it would just be wonderful for these kids to be normal again. I was amazed due to the pain mine had that the biopsy did not show a completely torn up stomach, etc. I am sure you are too. Tomorrow, hopefully she will be better and the meds can be started again already. Do you think these doctors understand the pain and suffering that goes with this? It sounds like you have a good one.

It is torture waiting on the results as well. I hope by some chance you will get answers before Thanksgiving. Jennifer

Thanks for your input so far.

She is much better today as I gave her Prevacid. It makes eating possible for her. I have started her on gluten free stuff and have decided the whole family is going gluten free. Her brother had horrible stomach cramps and I do not let him have wheat, but that is all I avoid with him. But he will too go totally gluten free. I do not know what else to do at this point except start trying stuff. It is just terrible when they are in so much pain.

Someone suggested allergy testing. Do they have to be eating wheat for that? Is that something for a specialist or is it ok if the pediatrician does it? If you are not referring to blood work, let me know that too. Her brother came up with wheat allergies on his blood work, which is how I found that out with him.

Thanks so much. I think we learn more from each other than the drs.

Jennifer

I do not know what to do. My 5 year old has been having stomach pain, where she begs me for medicine and screams and cries. She is in a severe amount of pain and she almost panics. She says it hurts all the time, but it certainly gets worse at points. She was put on Prevacid, which seems to help some. She is constantly on Tylenol. She tested positive on the DGP IgG, and that led to a biospy today. The dr did not see any "visual signs" of celiac. Did not see anything abnormal.

She cannot take Maalox or Prevacid due to the pH meter she has in her nose. It is reading in the 6 range all day, and I do not think it is going to come back with anything.

I am just fed up. She is in so much pain and has been for 2 months. She does not enjoy eating. Says stuff sounds good but does not taste good. Everything makes her stomach hurt.

We will get the pathology reports on the biospy, but the dr does not think it is that as he could see the villi and said it looked fine. That is next week before we get them.

What do I do. He said if this stuff is neg, we look at other things. Like gallbladder, etc. In the meantime she is suffering.

I asked if I should take her off gluten, but he said no to wait for the biopsy.

Any help is appreciated. I am just frantic because I cannot help her and she begs me to. Jennifer

The total IgA was fine at 89 mg/dl. (range 41-395 mg/dl)

Why would only DGP IgG be positive? If you had Celiac, wouldn't the DGP IgA be positive? Or is the IgG more indicative of intolerance rather than Celiac and that is why they are not both positive? Thanks, Jennifer

For any of you, did jumping around and running make your stomach/abdomen hurt? Thanks, Jennifer

It is my daughter, just turned 5, who has it. She is scheduled for biopsy next week. She is only positive for DGP IgG out of all the tests. I think it was that that triggered them to test for celiac. We are in TX. Thanks

I forgot to say she is on Prevacid 15 mg twice a day, so really I would think it would help more if it was just acid. It does allow her to eat for a few bites. I have to take her off that after today because of the biopsy. I dread it. Jennifer