Need Guidance Fast!

[NHMOM]

Hi..thank god for this board.

My 15 yr old, who has yet to be diagnosed, has lost 12 pounds since the end of Nov.

Never had any known allergies, until she kept having diarrhea,up to six times a day, stomach cramps, fatigue and all the celiac symptoms.

Stool samples were neg for infection.

Her Celiac tests came back neg. Took her to GI, saw a NP who doesnt know what to think and put her on

prevacid, when she has no upper GI probs at all.

She is so weak and lethargic, it's scary. My husband took her to the ER yesterday, and they had no

intention on listening to the fact it could be celiacs...I wanted an IV tube for her as she has no nutrients

and is very dehydrated even though she keeps drinking water. No iv tube, sent her home with a diagnosis of diarrhea....? We already knew this...unbelievable.

Im taking her back to the GI on Thurs, hopefully we will see the doctor this time.

My daughter also has those blisters, on her back, legs, pubic area. I believe they are DH. All signs

point to Celiac and no one seems to be listening. It certainly doesnt help that the tests came back neg.

I'm afraid my little girl is going to collapse, you know...no nutrition is staying in her body.

We did get some gluten free protein shakes and bagels yesterday. Talk about expensive.

I am going to Hannafords today, to try to get some stuff for her.

Do any Major brands carry gluten free white bread? Like Arnolds, Thomas', Pepperidge farm.

I don't want to spend ten bucks on bread that tastes like cardboard.

Any quick tips would help.

Any guidance would be so appreciated.

I feel because of her age, dear daughter is getting lost in the shuffle. It's devastating to see her this weak.

Thanks for listening!

[ciavyn]

Try making her some bread, if that is important to you. Pamela's bread mix is excellent, and is sold at a lot of major stores (I can get it at WalMart here). Kinnikinnick bread rolls and breads are in the organic freezer section of some larger grocery stores.

But even more than that, if you want to get her off gluten to see if it helps, make her some homemade soup without noodles (make your own chicken stock) and feel her whole foods. It will be easier and cheaper than trying to navigate the gluten free offerings - some of which are good and some of which are terrible. Think the early stages of the south beach diet, when only vegetables, meat and protein, and fruits are allowed, and that is what you want to get. I'm sure you'll get additional great advice here.

[Jestgar]

Yes, stick to whole foods; meats, veggies, fruits. Cook everything because her digestive system may be too damaged to deal with fiber. No milk for a while, it's hard to digest.

[Ahorsesoul]

If you post a request for a doctor along with your city and state under the Doctors thread you might find someone that knows a doctor in your area that understands celiac disease.

https://www.celiac.com/gluten-free/index.php?showforum=6

For bread I suggest Udi. It tastes the best out of all I've tried so far. Expensive, yes.

Against the Grain has excellent baguettes, rolls and pizza crust.

I think Bi-Aglut makes the best pasta if she tolerates corn products.

She should not eat any gluten, dairy or soy until her intestines heal. This is hard but once healed she might be able to add dairy and soy. Gluten hides in everything: root beer, orange soda, soy sauce, soup, toothpaste, so read labels carefully.

If you do not have a gluten free kitchen, learn about cross contamination. One tiny bread crumb in some butter will set off another attack. Wood, plastic and coated pans can hold gluten. Toasters and bread machines that have been used for glutened items should not be used for a gluten free person.

Keep us informed on how she is doing.

[Salax]

First I would like to say, Take a deep breath and breathe. You've come to the right place.

Now, for your little one make sure she drinks water and gatorade (the fruit punch and most of the other flavors are Gluten Free, I think only 2 have gluten if they still do at all), also Jello is good. That should help keep her hydrated.

Second, for food. I would not give her any veggies or fruits at this time, they are hard to break down in a inflamed tummy/bowl. Go with homemade chicken soup or Pacific brand has chicken broth that is clearly labeled Gluten Free. If she needs something in the broth, go with white or brown rice (check the labels, but natural rice is gluten free). Scrambled eggs or soft boiled eggs are good too. I would recommend LITE meals, more liquids than food at this point. She is risking dehydration with all the D.

Third, keep the gluten away from her for now.

Fourth, I would recommend probotics to rebuild the bacteria she is losing. I would take about 5 through out the day for about 3 days. If there are about 1 billion cells that would be the right dose to help build it backup.

I would highly recommend to get her to a doc and have a full bloodwork up as well at the full celiac panel, with the allergen food blood test (not sure what that is called). I had several negative stool and tissue tests, so the docs ruled out celiac....However; my blood kept coming back positive, so I feel your frustration. Did you get the blood test done? If so, I would demand the lab results so you can read them yourself or we can help you out here.

Lastly, I am not a doc, but I have been through it....I hope this helps. Best of luck to you.

[ravenwoodglass]

I would get her into a derms office ASAP. The derm should biopsy the area next to her lesions to check for DH. If she has DH she has celiac and no more testing is needed. If you have her go gluten free now and you later decide to have a biopsy done she will have to go back on gluten for about 3 months before the test. Pure misery for those of us whose bodies are reacting. However a good response to the diet is also diagnostic, especially if the blisters disappear without gluten and reappear when she gets accidentally glutened.

[earlysu]

Hi..thank god for this board.

My 15 yr old, who has yet to be diagnosed, has lost 12 pounds since the end of Nov.

Never had any known allergies, until she kept having diarrhea,up to six times a day, stomach cramps, fatigue and all the celiac symptoms.

Stool samples were neg for infection.

Her Celiac tests came back neg. Took her to GI, saw a NP who doesnt know what to think and put her on

prevacid, when she has no upper GI probs at all.

She is so weak and lethargic, it's scary. My husband took her to the ER yesterday, and they had no

intention on listening to the fact it could be celiacs...I wanted an IV tube for her as she has no nutrients

and is very dehydrated even though she keeps drinking water. No iv tube, sent her home with a diagnosis of diarrhea....? We already knew this...unbelievable.

Im taking her back to the GI on Thurs, hopefully we will see the doctor this time.

My daughter also has those blisters, on her back, legs, pubic area. I believe they are DH. All signs

point to Celiac and no one seems to be listening. It certainly doesnt help that the tests came back neg.

I'm afraid my little girl is going to collapse, you know...no nutrition is staying in her body.

We did get some gluten free protein shakes and bagels yesterday. Talk about expensive.

I am going to Hannafords today, to try to get some stuff for her.

Do any Major brands carry gluten free white bread? Like Arnolds, Thomas', Pepperidge farm.

I don't want to spend ten bucks on bread that tastes like cardboard.

Any quick tips would help.

Any guidance would be so appreciated.

I feel because of her age, dear daughter is getting lost in the shuffle. It's devastating to see her this weak.

Thanks for listening!

[earlysu]

My first bit of advice is to have her go gluten free immediately, if only for a couple days. I was diagnosed with celiac disease in August after suffering from chronic diarehha for six months. I was becoming the incredible shrinking woman and could no longer plan on leaving home without a 'bathroom backup' plan. Prior to my official diagnosis, I went to the health food store and bought a small fortune's worth of gluten free food. In less than 48-hours the diarehha stopped!! Within a week my energy level improved so much that my children were greatly relieved. I am now gaining weight (sometimes to my dismay:) since I know how to eat. I believe the gluten free diet has saved my sanity and my life. And with all that I continue to learn (it's still very new to me), I think a lot of people should go gluten free even if they haven't been diagnosed with celiac or gluten intolerance. In order to better comprehend the whole issue, I think of gluten as "glue". Get rid of a lot of the glue and your body will function better. That's my layman's philosophy.

[mysecretcurse]

My advice is to not worry about gluten free bread or anything like that for awhile. Get that girl on some good wholesome food, not processed crap like breads or other premade gluten free things. I dont eat bread at all. She needs stuff like meat, well steamed vegetables, GOOD fats like avacado and flaxseed oil, etc. Check out the Specific Carbohydrate Diet if you haven't already, it helps a lot of people. And don't count on doctors to help you, a lot of people here myself included were basically left to die by doctors who either shrugged their shoulders and gave up, repeatedly threw misdiagnosis at us or even suggested it was all in our heads. If you can find a good doctor, great... just saying. Don't count on them.

[misslexi]

Go give your daughter a great big hug. I am positive she needs it, because I can empathize with her and I'm sure my mother can empathize with you. I'm only a little bit older than your daughter, and sounded just like her a year ago. ER visits and all. I lost 35 pounds over about 4 months. I was (am) deficient in like...everything lol. For some reason I started to get better before I got worse again. But since going gluten free its been like night and day. I went from throwing up several times a week, constant stomach pain and fatigue, as well as all the other stomach issues, to half way health in only a few weeks. Its a struggle alot of the time, in the beginning anyways, but it does get easier and it does get better.

Don't worry about bread. She won't miss it. The frozen store bought stuff is expensive, and your money would be better spent on a cardboard box. Just as tasty too. I've tried that, and we've tried a bread mix from the Gluten Free Pantry. It was very good when it was warm, but after that it felt really heavy, dense, and dry. I didn't enjoy it at all after the first few hours. Now it has been at least a month since I last had a piece of 'bread' and I don't miss it one bit. For fancy breakfast, I have potatoes instead of toast. I never really liked sandwiches after years of eating them every day for school. Bread has no place in my world anymore, and it really isn't as bad as you might think.

When you cook things from scratch, its pretty easy to avoid gluten, as long as you read ingredients. Rice flour is easily substituted in sauces, rice pasta for regular noodles, baking is another story though. The only time I ever tried directly replacing wheat flour with gluten-free flour, I was successful but I think it was a fluke. You might want to invest in a cookbook, I like "You Won't Believe It's Gluten-Free!" by Roben Ryberg, the recipes are all one flour, and the ones I've made were really yummy. I made the corn based banana bread...tasted just like the one my mom makes, as far as I could remember.

Snacks are hardest I find, but there are some really yummy rice crackers/chips out there. Fruit is always good. I've started baking again because I missed cookies and glutteny sweets like that more than anything. And if you look around a bit, its not hard to find easy recipes like the ones in my fav cookbook up there. I have another one, but all the recipes require like 4-6 different flours...and its rather intimidating. Plus alot of the ones I've seen always add something, so its like flax seed banana bread. and zucchini loaf. and cookies with weird stuff in it...its really comforting to be able to make the same baked goods I grew up with, but gluten free and easy.

If your daughter wants someone closer to her age to talk to, who has honestly been through the same horrible terrifying experience, I'm here. I think it would have helped me to have someone to talk to, I know it was really hard on my parents to take me to all sorts of doctors for all sorts of tests that didn't help. And they weren't really able to just listen to me complain and rant, without offering a solution, or getting upset with me because they didn't have the answers, or just couldn't keep hearing it in general. Its not just hard on the person whos going through it, its hard on everyone around them. It really hurt my mom that she couldn't make me feel better. So yeah, I'm here if she (or you even) would like. Even if its just to give you a list of junk food, or some gluten-free comfort baking that I know is yummy and will make her feel better.

[ryebaby0]

You've not posted and I'm worrying your daughter's condition is even worse! But let's hope you are just busy...

I would get her gluten free now. The diagnosis being "official" is less important than her health. My son was dx after a rapid and debilitating weight loss that put him in the hospital for 7 weeks. He ate (after about 14 days of direct stomach feeding -- an naso-gastric tube) only rice and chicken with olive oil. It helped him gain weight and recover while he healed, but you may need a prescription product called Peptamen if she worsens. Rapid weight loss is terrifying and needs to be addressed, your instincts are right. Variety be damned right now, you both need some comfort and security.

Try something simple for both of you -- a diet of only a few foods. The specific carb diet is (in my humble opinion) too complicated for a mom already facing a crisis. No reputable doctor will dispute the diagnosis if she becomes markedly better on a gluten-free diet; the myth of the 3-months of gluten to be tested is just that, a myth. There are many good doctors who do know what they are doing. If she doesn't respond to a gluten-free diet in about 10 days, take her to Boston Children's. Don't be afraid to call and insist, paint the picture of her dangerous situation.

Anello's in Portsmouth is an entirely gluten free bakery. Rafferty's up in N Conway is a gluten-free restaurant. NH is a great place to go gluten-free (Hannaford's also carries a great many gluten-free things, as does Shaw's)

PM me if you want, we've been here before! Hang in there