Gluten Challenge

[Hailiesmom08]

My daughter and I are both undiagnosed celiac. We had a GI appt yesterday and im happy to say he was awesome! He did not push putting our daughter through the gluten challenge what so ever in fact he didn't even recommend it after we told him how she reacted after her last exposure. He did however state that if I can get tested he would be willing to diagnose my daughter based off of my results and her diet.

I would much rather me go through the gluten challenge than my daughter so I am willing but pretty damn nervous.

I have been gluten free for about a month. I read in other posts to eat 3 slices of bread daily for two months but given the fact that I have only been gluten free for a month does this guideline still apply?

I guess im hoping ill only have to do this for a month lol.

Any suggestions woupd be grately appreciated!

[Reba32]

if you've only been gluten-free for a month, and if you *are* Celiac, then you may have started to heal, but not by much. It really depends on if you are, and how long you have been, if you follow.

When I did the gluten challenge I'd been mostly gluten-free for a year, and the first serving of gluten I ate, had me doubled over in pain. And then I had to endure 8 weeks of that. I wouldn't wish it on anyone, but I wanted the diagnosis, not a guess. I ate 2 to 3 servings of gluten-y foods per day, except for the last week, when I just couldn't handle it anymore and only had one per day. I was sooooooooo happy to stop that challenge I must say!

Have you had the genetic tests done for you and your daughter?

[Hailiesmom08]

I have not been tested at all yet I was so sick of hurting and having the worst bm's I just stopped eating gluten.

My daughter had the celiac blood panel done but due to IGA deficiency hers naturally came back negative.

I was just going to stay gluten-free and chalk it up to being celiac because of what gluten does to me. I also can't eat corn, rice or potato's without hurting or getting a head ache.

My daughter however I feel needs the diagnoses for her future.

[ravenwoodglass]

You should talk to your child's ped. Tell him what the GI doctor said and about the improvements you have so far seen for both your child and yourself. Chances are the ped has seen your child's health issues on gluten and may give you a 'diagnosis' to keep her safe at school without either of you having to go back on gluten when it is clear her problems are resolved off gluten.

If you do decide to go the challenge route then yes do go for 2 months to get as best of a chance as possible for an accurate result. Be aware that even on gluten you may have a false negative. You should also talk to the GI doctor about what to do if you have a severe reaction to the challenge. Some doctors will have you drop the challenge if your reaction is too severe.

[domesticactivist]

I'm doing a challenge and based on research decided to eat 20 grams of gluten (look at the grams of protein per serving in a gluten containing food) a day for three months. I'd been off it for a year when I started. Before starting I talked with my dr and got all the tests ordered so that if it gets too bad I don't have to see my dr or wait at all, I can go straight into the lab. Of course a scope would take a bit more scheduling but I'm not going that route. I'm a month in and it has been bad but nothing touching what many others experience. even still it's been hard to stick with.

Like you, I have a child who is "unofficially diagnosed" on symptoms and genetics. He is down for at least a day when he just gets slightly cc'd and his problems have put him in the hospital several times so a challenge is completely out for him. There are lots of good reasons to get a diagnosis, especially for kids. It's great your GI will consider it.

[srall]

You are a good mom...I could never do the gluten challenge. After being off gluten for 8 weeks I was on vacation and thought I'd just let loose on the gluten a little bit...BIG mistake. Anyhoo, ended up at the doctors not knowing what the heck happened and was told, "I think you have celiac but you'll need to eat gluten for 8 weeks to diagnose." I'd just spent 3 weeks in bed with crippling arthritis sleeping 16 hours a day. Forget it.

My daughter was also taken off gluten by me (with her pediatrician's full support) even though she had a negative blood test. So..I'm assuming that even if you test negative for celiac, you and your daughter will stay gluten free? It is hard with a child to not have an official diagnosis, but I was nervous about putting my daughter through it all (endoscopy) and still having a negative diagnosis which then might cause us more problems...

[Hailiesmom08]

Ravenwoodglass- that is a great idea and wish it was an option for us but unfortunately we are,having to switch our pedi. Our current one has always been good but since approaching the celiac issues he doesn't seem to know jack giving that he advised us to give our daughter gluten for two days for blood work. It hurt her so bad she has regressed since and now has 3 ft. of poop clogged in her and is more sensitive to other foods than prior to the two day gluten exposure.

Her GI said two days on gluten did her no good foe blood results. So Friday we see a new pedi to talk about the on going yeast infections and yeast growth on her head.

Domesticactivist-let me see if I understand what you had said right. For however many grams of protien in a gluten food that is how many grams of gluten there are too?

Thanks for the support if I come back negative we will just both remain gluten free and stress up the school issues when the time comes

Srall-Thank you! I'll do anything for my little girl

Fortunately if I do have celiac im not as sensitive as most. I get dizzy, bad nasty poos the next day, nausea and stomach pain but not to the ooint where im doubled over in pain. You can however hear my stomach rumble from a mile away lol.

[ravenwoodglass]

Don't worry about trying to figure out how many grams of gluten is in a food. Just eat a regular gluten filled diet, cereals, bread, pasta, cookies, etc. Just have a gluten ingredient in each meal and snacks.

[love2travel]

Don't worry about trying to figure out how many grams of gluten is in a food. Just eat a regular gluten filled diet, cereals, bread, pasta, cookies, etc. Just have a gluten ingredient in each meal and snacks.

My GI doc and dietitian told me the same thing. Just as long as it works out to roughly the equivalent to 3-4 pieces of bread per day it should do it.

[domesticactivist]

I think it's been helpful for me to count the grams. I've never been a calorie counter or anything like that but with this challenge there are a few reasons it has helped me:

1. Our normal diet hasn't included any grains for a year. I just don't think to eat things like breads and pastas any more, and we have to buy them special.

2. The rest of the family is gluten-free and I have to be very careful about cc for my son. He also has a hard time watching me eat gluten in front of him. He's ok at other people's houses but home is supposed to be a safe place. So eating it with every meal seems risky and insensitive in this situation.

3. If I can get all my gluten in one sitting that's safest for my son and I get part of the day feeling less sick, but it's more than I'd normally choose to eat at once.

4. Since eating gluten makes me feel sick I've lost my taste for it, and wouldn't choose to eat a normal amount intuitively.

If you haven't been gluten-free long and it's still a normal part of your family life or cooking style and doesn't make you feel very sick, I think counting grams wouldn't be necessary. In my situation even though I'm trying for 20 there are many days I don't eat that much. I think I wouldn't ever come close without counting.

[domesticactivist]

I don't know how precise the protein gram - gluten content connection is, there could be other forms of protein in some gluten containing foods. But gluten is the protein in wheat so that's how I decided to estimate it.

[Hailiesmom08]

Okay thanks!

Ya my situation is kinda like yours, my daughter will be 4 and feb. And is very aware that mommy hasn't eaten gluten in a month and loves that she isn't alone in this. Today its my first day of the challenge and I found myself sneaking the gluten foods bc I don't want my daughter to think its ok to cheat. I dreaded eating anything gluten and honestly couldn't think of anything that sounded good.

Within an hour my stomach started rolling then got bloated then the nausea followed :/

Not looking forward to my next bm.

[ravenwoodglass]

Okay thanks!

Ya my situation is kinda like yours, my daughter will be 4 and feb. And is very aware that mommy hasn't eaten gluten in a month and loves that she isn't alone in this. Today its my first day of the challenge and I found myself sneaking the gluten foods bc I don't want my daughter to think its ok to cheat. I dreaded eating anything gluten and honestly couldn't think of anything that sounded good.

Within an hour my stomach started rolling then got bloated then the nausea followed :/

Not looking forward to my next bm.

Do you get up before her? If you do cram in a couple of slices of bread before she wakes up. If not maybe make her some cream of buckwheat for breakfast and you could have cream of wheat. At snack time you could give her some gluten free Snyders pretzels while eating a handful of gluten stick pretzels. Then when she goes to bed or naps you could down another couple slices of bread. If this challenge makes you too ill, and it sounds like it is already giving you a reaction, be sure to let your doctors know. Some doctors will stop the challenge and diagnose at that point.

[Hailiesmom08]

Ravenwoodglass-

Thank you for the great suggestions...I only wish I could use them.

My daughter's system is in hyper drive right now and is reacting to everything aside from veggies, fruit and meat. I do wake up before she does in the morning so I sneak into the kitchen and down a bowl of gluten filled cereal then throughout the day eat stuff when she isn't looking or while napping :/

I have never spoken with my doctor about celiac so idk how knowledgeable he is with it. I probably should get in to find out.

[Booghead]

Sounds like you got lucky with a decent doctor. I'm jealous.

[domesticactivist]

Good luck. This is not fun

I want to say that it might make sense to explain to your daughter what you are doing. Of course you know your child best and she is quite young so it's different than with my 11 year old. Still don't eat it in front of her if you can help it of course, but explain that you aren't cheating - that you have to eat it to get tested, and that it is making you sick.

I think it would be very difficult to completely hide the fact that there is gluten going down and if she sees you getting sick on your supposedly gluten-free diet that might discourage her.

[Hailiesmom08]

My husband and I have really thought about telling her but with her being so young im not so sure she would be able to comprehend the whole thing. She understands that we have celiac and what eating gluten/dairy does to her... at this point that's all I want her to focus on.

Day #3 of my gluten challenge and I feel so sick... Someone please tell me that the way I feel now is how it's going to be for the whole challenge and not get any worse? Though I can barely take what I'm going through now I will for my daughter however if it gets worse as time goes on idk if I can last

[domesticactivist]

My husband and I have really thought about telling her but with her being so young im not so sure she would be able to comprehend the whole thing. She understands that we have celiac and what eating gluten/dairy does to her... at this point that's all I want her to focus on.

Day #3 of my gluten challenge and I feel so sick... Someone please tell me that the way I feel now is how it's going to be for the whole challenge and not get any worse? Though I can barely take what I'm going through now I will for my daughter however if it gets worse as time goes on idk if I can last

I hate to say that my experience so far has been that it does get worse. Have you talked with your doctor about scheduling your tests yet? You may want to get your tests scheduled so that if it's just unbearable you can go get tested immediately if you stop the challenge before your 3 months are up. The results won't be as valid if they come out negative, but they still would have a chance of being positive.

[ravenwoodglass]

My husband and I have really thought about telling her but with her being so young im not so sure she would be able to comprehend the whole thing. She understands that we have celiac and what eating gluten/dairy does to her... at this point that's all I want her to focus on.

Day #3 of my gluten challenge and I feel so sick... Someone please tell me that the way I feel now is how it's going to be for the whole challenge and not get any worse? Though I can barely take what I'm going through now I will for my daughter however if it gets worse as time goes on idk if I can last

I am sorry you are going through this and while I do hope it doesn't get worse it can. Do keep your doctor advised about what is going on.