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Hoping For A Dx's

vampella

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vampella Contributor
vampella
Posted

Hi, My name is Char.

I have 2 beautiful little girls.

Leigh-Ann 61/2 and Emmah almost 4. I had both my girls tested back in the spring for celiac because it runs in my family. it came back negitive for both of them.

My 4 year old Emmah has had Chronic diarrhoea since she was little, light color, floats...smells SO BAD and she goes 3 or 4 times a day sometimes. she's had failure to grow since she was about 18 months. She's going to be 4 soon and is 26 lbs and 35 inchs tall. she's lost 4 lbs in the last 2 months. her diarrehoea has gotten worse, she gets hives, leg pain gags on pasta type foods and so on. It's a long story I'm sorry I wont write it all (too long) her doctor is so great.

She goes every week for checkups and keeps loosing weight, the doctor thinks maybe he tested her too early for her body. he thinks her body is now telling us that it is time to re test. She has had so much blood work, fecal samples and this friday had 2 abd. X-Ray's because when he felt her tummy all he could feel was gas. Turns out her tummy was FULL of gas. I'm an animal health tech and know how to read x-rays so when we were taking them back to the doctors from the x-ray clinic I had me a look lol.

I've never seen so much gas in one small being before, poor girl. The doctor was writing up a referal to a GI specialist at the childrens hospital. He said depending on how the ttg test and the 2 other celiac tests come back the GI specialist may want to biopsy either way. I am hoping for that. If all these celiac test come back negitive I am going to put her on a gluten-free diet and see how that does. I know in my heart that it's celiac but it's proving it to my brain. Last night my parents invited us for dinner (spagetti) and poor Emmah's couldn't sleep she was put down at 8 and she was down here by 8:30 saying her tummy hurt and she couldn't sleep. Her tummy was so big and hard and hurt so bad last night she couldn't get to sleep. SHe was up until 11 pm with me rubbing her belly. That really conformed it for my husband.

Does this sound like I am on the right track? Does anyone have any advice for me for what I should request from the GI specialist?

Thanks in advance.

Char

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Ursa Major Collaborator
Ursa Major
Posted

Hi Char, and welcome to this board. Poor little Emmah. Yes it sure sounds like celiac disease to me. If her tests come back negative, you might want to put her on the gluten-free diet anyway, and maybe have her tested by Open Original Shared Link. They do stool testing, which is way more sensitive than your regular blood tests. They also test for the genes that predispose you to celiac disease or gluten intolerance.

It is pretty telling that especially foods containing gluten will make her feel so bad! The sooner all the testing is done, and the gluten eliminated from her diet, the better.

Your doctor should have suggested the gluten-free diet when the tests came back negative the first time. A lot of very ill children test negative, those tests are highly unreliable, especially in children under five. A positive response to the diet is a very valid test, too.

TCA Contributor
TCA
Posted

Sounds like Emmah has it to me. My son had very similar issues and went thorugh testing 3 times. The first 2 were negative and the last was inconclusive. We put him on a diet trial and the results are amazing. Remember that most kids under 5 often have false negatives. The testing is not reliable for them. I hope you get a definate answer, but if you don't, please give the diet a try. It has made our lives so much better. Hope she feels better soon.

vampella Contributor
vampella
Posted
  • Author

Thanks so much, it sure help to hear that I'm not the only going through this. I also wouldn't wish it on anyone!!

We started the gluten-free diet last night, it's not cheap but it's worth it. We did find out from the man that owns the gluten free store here that we can claim her food on our income tax return so that will be a help.

If anyone has any simple gluten-free recipes please share!!

Thanks

Sounds like Emmah has it to me. My son had very similar issues and went thorugh testing 3 times. The first 2 were negative and the last was inconclusive. We put him on a diet trial and the results are amazing. Remember that most kids under 5 often have false negatives. The testing is not reliable for them. I hope you get a definate answer, but if you don't, please give the diet a try. It has made our lives so much better. Hope she feels better soon.
GFBetsy Rookie
GFBetsy
Posted

Check out the cookbook "Saving Dinner" by Leanne Ely - it's a great book. It wasn't intended to be a gluten free cookbook, but many of the recipes are naturally gluten-free. Also, the website www.eatingglutenfree.com has a lot of "normal" recipes (like soups, main dinner dishes, etc.) that don't require a lot of strange ingredients.

I would also suggest that you sit down and come up with a list of all of the things your family eats now that are already gluten free (baked potatoes, tacos, etc.). That will help you a LOT as you start coming up with a gluten free menu.

If you are looking for any specific recipes, let me know. I do a LOT of gluten free cooking and consequently have a lot of recipes :lol:

Good luck!

By the way, if you intend to have her blood work/biopsy done, she must be eating wheat for at least 3 months before the procedures are done. So don't take her gluten free right now if you want them to be accurate reflections of what's going on. On the other hand, if you take her off of gluten and all of her symptoms go away, I'd say you've got your answer without the expense of a biopsy, haven't you?

vampella Contributor
vampella
Posted
  • Author

I am at this point not waiting for the biopsy. I have already gone gluten free and I am already seeing differences in her. I do understand it could take a long time for her D to get normal. the reson I am not waiting for the biopsy is because we have a HUGE anesthesiologists shortage here right now and they couldn't tell me how long it would be *if* they did one. The diet eill be proof enough for me.

She has had the blood work done already. I actually just called about 30 mins ago and the young girl said well her file is on his desk, he could be writing the specialist or have the test result he should call you in the next few day....GIVE ME THE RESULTS!!!! LOL

Taco's have no gluten in them? I would have though gluten. I take Emmah to see the dietician tomorrow. I'm doing this all myself so I figure the more info the better.

Thank you so much for the book and website I will check them out right away.

THANK YOU SO MUCH

Check out the cookbook "Saving Dinner" by Leanne Ely - it's a great book. It wasn't intended to be a gluten free cookbook, but many of the recipes are naturally gluten-free. Also, the website www.eatingglutenfree.com has a lot of "normal" recipes (like soups, main dinner dishes, etc.) that don't require a lot of strange ingredients.

I would also suggest that you sit down and come up with a list of all of the things your family eats now that are already gluten free (baked potatoes, tacos, etc.). That will help you a LOT as you start coming up with a gluten free menu.

If you are looking for any specific recipes, let me know. I do a LOT of gluten free cooking and consequently have a lot of recipes :lol:

Good luck!

By the way, if you intend to have her blood work/biopsy done, she must be eating wheat for at least 3 months before the procedures are done. So don't take her gluten free right now if you want them to be accurate reflections of what's going on. On the other hand, if you take her off of gluten and all of her symptoms go away, I'd say you've got your answer without the expense of a biopsy, haven't you?

TCA Contributor
TCA
Posted

If you're going gluten-free, you might want to check out the link in my sig line to a thread talking about how to get started. Good luck!

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  • 3 weeks later...
vampella Contributor
vampella
Posted
  • Author

Soooo, it's been almost a month now gluten-free. Emmah is doing GREAT!!! OMGOSH GREAT!! she looks healthy again, her stools are NORMAL WooooHooooo. she wants to be awake, she's not sleeping her life away.

she's starting to want to eat anything again, like pastas. she loves the gluten-free pasta I can't remember the name starts with a T. she loves all the gluten-free foods which is great.

She was glutened 2 times and I knew because she got D and was cranky and her belly hurt. One time was at her halloween party at preschool.."they can't watch er 100%"..and the other must have been my fault...must have been CC from sour cream or the taco shells I used..they didn't list any gluten products...not that that means much. I felt horrible but I know now that accidents happen and I'm only human and if the box doesn't list any Gluten item it's not my fault that she accidentilly got it. I had a hard time with that at first, I made her sick and I felt so bad.

I don't think the preschool really understands...the director say's her MIL has celiac but doesn't worry about CC and goes to all places to eat out and eats chineese alot...I don't know if she really has celiac or if this woman is telling another of her "stories" she doesn't seem too know much about it to have a family member with the disease.

Anyway. Emmah's doing great, so great. Her doctor say's she's doing great, we go back the 17th to see if she's gained weight yet. he know's she has celiac D and just doesn't know why sher TTG was neg. I called him yesterday and here in manitoba all they are allowed to rus is the TTG so none of the other 4 tests were run. I told him IgA diff can cause faluse neg's and he agreed and said we could run an IgA diffec if I wanted so we will do that on the 17th, not that it maters from a celiac stand point because I already know she has celiac but it's good to know if your child has an IgA diffic.

Anyway...The children are screaming..."I'M hungry..mommy come feed us" lol I better go.

Thank you all for all the support you gave me.

Char

rez Apprentice
rez
Posted

so happy she's feeling better! your kids are adorable! way to go!

Guest nini
Guest nini
Posted

your daughter's story sounds so much like my daughter. Her test was negative but once I put her on the diet, whoa! Miracles!!! She's been gluten-free now for 3 years and is a very happy healthy six year old and is doing great!

Since Celiac is genetic have you or your husband been tested for it?

I don't know if you've seen my newbie survival kit yet, but if you haven't, check it out! Simply click on the link in my signature below for my web page and scroll down to the link for Newbie Survival Kit...

vampella Contributor
vampella
Posted
  • Author

I have been tested NEG but I am thinking about going gluten-free because I have some symptoms.

My husband has MAJOR symptoms and has all his life, no on ever worried about it or had it looked at so I told him he's going to be tested on the 20th. we have a strong family history on my side though.

I have your survival kit, it's a god send, thank you!!!!

I have it saved to my desk top lmao.

It'a amazing how fast the children get better after starting gluten-free, i though at first it would be months to a year and then I was she changing so fast. AMAZING

your daughter's story sounds so much like my daughter. Her test was negative but once I put her on the diet, whoa! Miracles!!! She's been gluten-free now for 3 years and is a very happy healthy six year old and is doing great!

Since Celiac is genetic have you or your husband been tested for it?

I don't know if you've seen my newbie survival kit yet, but if you haven't, check it out! Simply click on the link in my signature below for my web page and scroll down to the link for Newbie Survival Kit...

Guest nini
Guest nini
Posted

oh I'm glad he's going to be tested, I sincerely hope though that regardless of the test results he will consider trying the diet too... (just make sure he completes all testing before trying the diet.

vampella Contributor
vampella
Posted
  • Author

It's good that you reminded me about him being on gluten, I will have to change his appointment. We had just been doing alot of gluten-free eatting without noticing anymore. like tonight we had gluten-free pizza. I never even thought about it until your post..back on gluten he goes. LOL

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