Ok Need Help Again With Symptoms

[Melmelsmom]

Hello again and thanks to all who have helped me out over the past few days as I am new around here and have had many questions in regards to my daughter who has been on a gluten free diet for almost 2 motnhs now well 7 weeks.

Anyhow I was just wondering what others have experienced as far as symptoms.

I ask this because my daughter even with the gluten free diet seems to have a constant state of nausea sometimes so bad she is in tears and wont eat at all because of how terrible she feels.

Also she has been getting this really wierd rash mostly on the front of her body in the stomach and chest area and it sometimes goes onto the back and down to her bum....the rash is odd because it is not raised or anything but really red and patchy almost an orangish red. This rash was happening before the Gluten free diet as well but it is still here.

Just wondering if any of you have had these types of symptoms with Celiac?

I took my daughter back to the pedi GI specialist at Childrens hospital yesterday and he wants to start doing some other test on her for other things that I guess some Celieac can have along with Celiac.

So any thoughts or words on what others have experienced would be very helpful.

Also I guess I am off to the DR to get tested for this as her Dr said it would be wise for us to all get tested sincce this can be a genetic thing....so for others another question I have is how many in your family have this.

I do feel after reading all the symptoms of Celiac that I very well could have it and be the one who has given it to my daughter.

Symptoms I have:

Stoamch pain very often

back and forth constipation and the other you know the big "D" (this one is horrible because I always worry on a road trip and avoid eating because I am afraid I will have to stop and use many restrooms along the way and it is no fun when you have the big "D" to be sitting in Burger King bathroom with horrible cramps that make you feel like you are going to pass out!

Also another thing that happened to me in 2005 was I got very aniemic with a hemoglobian of 4.9 and ended up in the Hospital in Urgent care for 6 days during which time I was given 7 blood transfusions and 3 iron transfusions

So all in all I have had many things that are on the list for Celiac and although I realize that this does not mean for sure that I have it I can say that I would be surprised at this point if my tests come back negative.

I try to look at it in a positive light though that if this is what my problem is then at least I will finally have a way to feel better and not have to worry about episodes while I am out in public.

Ok well I look forward to getting some response and more help.

Thank you all for your kindness.

Blessings,

Melmelsmom

[Guest thatchickali]

The rash sounds like DH, which I don't have but I'm sure there will be people to tell you about it.

I still have nausea, I feel like her too, don't want to eat in fear of getting sick.

I'm seeing a dietitian tomorrow, and my doctor thinks I should start considering other food intolerances as well. Today I've been gluten free 2 months... no better, almost worse now....

I would also recommend you get tested (sounds like you are planning on it). Even if you're not completely ill everyday, you could have it and be doing damage you can't feel to your insides.

I don't know if you have looked into cross contamination by cooking with the same utensils as you use for gluten containing food but that could be keeping her sick.... Especially things like cutting boards, and nonstick pans.

[texasgal]

"Anyhow I was just wondering what others have experienced as far as symptoms."

I have the nausea quite often. My symptoms after being glutened and withdrawals from gluten include body aches, severe headaches, stomach swells, stomach pain - both sharp stabbing pains and dull aches, brain fog, no energy, occasional unexplained rash, moodiness (to be expected) after all, I do feel bad

I've been on this diet for almost a year. Was sick for the last 4 days from being cross contaminated, so be careful. I never thought I was that sensitive to gluten but I am. The one thing I think we all share as far as symptoms - is that we get really tired of feeling bad - look out for depression

You're doing great and you have the good sense to ask questions and check out what others are writing. Good luck

[gfgypsyqueen]

You might want to ask about having the rash biopsied. That will decide if it is DH or not. I have been unable to get an oficial diagnosis for my youngest, but she is better and has no rash on the gluten-free diet. Accidental gluten and the rash comes right back.

The nausea comes and goes. Find her comfort food. For me it is plain rice or rice and soy sauce. Alwyas makes me feel better. Too much juice, acid, soda, etc might be really irritating to her system while she is healing too. Too my grease makes me sick to my stomach too.

Like someone else mentioned check for cross contamination problems. Check for hidden glutens. Check all of her bath products, lotions, and cosmetics for gluten.

[BettyL.]

Check out any medicines she is taking. I started to develop a similar rash last fall. After a food dairy, etc I found nothing to explain it. I discover It was the blood pressure medicine I was taking. Change of medicine and rash has disappear.

[Melmelsmom]

Thank you all for your replies.

I can answer a few of the questions tha were asked.

I know someone said something about medicines she is taking. She takes none at this tme so that one is an easy one.

As far as making sure she does not get cross glutened.

I had thought we were doing ok because when we found out I did enough research to tell me along the way that if the entire house was not going to be gluten free then she needed seperate things like mayo, pb, jelly, butter. So we have done all those things as well as we threw out all our cook ware and cutting boards that were made of wood as well as our post and pans that were non stick and got all stainless steel items, we also bought her an entire set of tupperware that belongs to her and her alone and only gluten free items are stored in it. We got her a set of baking ware like cake pans cookie sheets etc that are non stick but they stay in her cabinet that we have set aside to make sure none of her stuff comes in contact with something that may be harmful to her.

We also have a large shelf in our pantry now that is strictly for gluten free food items and nothing else is allowed on this shelf.

So I guess my next question is am I doing enough? Is there anything else I should be doing?

Oh and to answer another quick question about hair products and makeup.

She does not wear make up yet but does use lotion so I have checked that and I have checked her Shampoo and conditioner as well as her toothe paste.

You know as I type this something just dawned on me and that is that my daughter has had orthodontic treatment and she is now wearing a retainer and also has some brakets on her back upper molars that have been sealed on her teeth with some sort of selant glue...HMMM do any of you think that maybe this glue has some sort of gluten in it that may be giving her constant contact with it? Or do you think maybe the retainer is made with ingredients that contain gluten???

What do you all think? I had never thought of that!

Do you think I should call her orthodontist and find out what is in these items?

Ok well once agian I thank you all fo ryour help and look forward to your responses in regards to my reply.

Blessings,

Melmelsmom

[BettyL.]

You know as I type this something just dawned on me and that is that my daughter has had orthodontic treatment and she is now wearing a retainer and also has some brakets on her back upper molars that have been sealed on her teeth with some sort of selant glue...HMMM do any of you think that maybe this glue has some sort of gluten in it that may be giving her constant contact with it? Or do you think maybe the retainer is made with ingredients that contain gluten???

What do you all think? I had never thought of that!

Do you think I should call her orthodontist and find out what is in these items?

Ok well once agian I thank you all fo ryour help and look forward to your responses in regards to my reply.

Blessings,

Melmelsmom

It is possible, check it out.

Betty L.

[confused]

I would call the orthodotntist, that could be it.

Does she go to school, if so does she use products that have gluten like chalk, play do, bubbles and the suck that contain gluten. Does she ever trade her lunches.

paula

[gfpaperdoll]

The cleaner that the dentist uses to polish your teeth are not gluten free.

Also, I suspect that your daughter has other food allergies. Is she diary free? I would start with dairy, soy & egg suspects...

also are you cooking with wheat (regular flour) flour in your house? or mixes containing flour??? if yes, you need to take that flour canister out to the trash...

[gfpaperdoll]

Forgot to say that I would cut out all Gluten Free grains - things like cereal, crackers, waffles that kind of stuff - all those grains/manufactured products have a certain level of cross contamination. Some people cannot tolerate them - me for one...