cdfiance

Thanks so much for that info. That's what I was hoping to hear. I think we'll just have to give yogurt a try and hope for the best.

I haven

The GI's office called and Alex's antibodies were indeed normal and he doesn't need to see her for another 6 months! We are very happy about that. We were engaged shortly before Alex got sick and were planning to get married this weekend but life intervened and instead we're celebrating 6 months gluten-free. It makes Alex a bit sad but I think her returning to health is more exciting than a wedding. That being said, I still can't wait to marry her, as soon as she's healthy enough to enjoy the whole wedding thing.

It would be great if Alex joined up here. Please tell her that she can contact me anytime, and that we'd love to see her on the board when she's ready.

Thank you, I will. That is very kind.

Thanks as always,

Ryan

Patti and Lisa, thank you both for the replies! It's a relief to hear that her levels should be fine. I was really afraid that she would be talked into having another scope if her antibodies were high.

Patti, I'm really sorry that you had such a long glutening. Hidden gluten should be illegal. I wish every product had a check box that just said gluten or no gluten.

Thanks again for the help. I take so much from this forum and give so little. I hope Alex and I can eventually be able to pay it forward and help other new Celiacs. I'm going to encourage her to check out the forum now that she's feeling much better than she was. She's knows no one with Celiac so it would be good for her to have people to relate to. I think she would benefit from both getting and giving knowledge. She's a bit more shy and reserved these days so I don't know if she'll join up but I do think it would be good for her.

Ryan

Does anyone know if an isolated glutening incident would cause antibody levels to be raised significantly and how long they would stay raised? Alex (my fiancee) had her six month follow-up with her GI and he did a Celiac panel. She was glutened almost a month ago and we don't know if that will affect the results of the panel.

We didn't get around to telling the GI about the gluten incident (quick, quick visit) but if her levels are elevated and he wants to see her again we'll definitely inform him about it. I was just hoping someone might know how likely it is that her levels would be affected. We're hoping to avoid the doctor wanting to do another follow-up endoscopy in the event that her antibodies are elevated. She really is starting to feel quite good so I don't think we need a biopsy to know that her villi are getting back to normal.

Thanks,

Ryan

Here is a picture of our fruit pizza -- our first gluten-free baking attempt! I can't take credit for its beautifulness, that's all Alex. I was instrumental in cutting the fruit though!

Just wanted to share our success.

Ryan

Here is another list of companies who will clearly list gluten--

Arrowhead Mills, Aunt Nelly's, Balance, Baskin Robbins, Ben & Jerry, Bertoli, Betty Crocker, Blue Bunny, Breyers, Campbells, Cascadian Farms, Celestial Seasonings, Country Crock, Edy's, General Mills, Good Humor, Green Giant, Haagen Daz, Hellman's, Hershey, Hormel, Hungry Jack, Jiffy, Knorr, Kozy Shack, Kraft, Lawry's, Libby's, Lipton, Martha White, Maxwell House, McCormick, Nabisco, Nestle, Old El Paso, Ortega, Pillsbury, Popsicle, Post, Progresso, Ragu, Russell Stover, Seneca Foods, Skippy, Smucker, Stokely's, Sunny Delight, T Marzetti, Tyson, Unilever, Wishbone, Yoplait, Zatarain's.

This is great. It's always hard to know which companies you can trust. Do you know if the same goes for these companies in Canada?

Ryan

My fiancee also has celiac and diabetes but both fairly recently so my knowledge is limited. Is the diabetes diagnosis recent? If it is then maybe her body is overcompensating for the metabolic imbalance before the diabetes was being treated. Does she have a lot of highs with her blood sugar? If so then she would be needing extra insulin and that could definitely cause weight gain. We have been told that this is especially true when one has an insulin pump.

The only other thing I can think of is a thyroid problem. My fiancee's endocrinologist checked her levels and antibodies when she was diagnosed with diabetes since autoimmune diseases like to travel in packs. So if you haven't had this done you might want to ask her endo about it.

One other possible thing. Could it be a growth spurt? I don't really know much about this but I remember hearing once that during puberty girls tend to put on weight before they grow taller whereas guys usually get taller and then gain the extra weight. You could always see if her docs can check to see if her growth plates have fused to let you know if she is still growing.

I hope you can figure out what's going on with your daughter,

Ryan

We made our fruit pizza and it went really well! Thank you so much everyone for all of the help. Alex was thrilled with how it turned out and we actually had a lot of fun making it. We had our families over yesterday for a belated birthday party for Alex and they all thought the pizza tasted great. Alex was so proud of our creation and it was great to see her so happy. She's been feeling quite good these past weeks so she was able to have a bit of the pizza too.

We took lots of pictures of our fruit pizza so I might be able to post it for you all to see when we get the pictures developed. It will give me a reason to set up the printer/scanner that we got way back when Alex first got sick.

Many, many thanks for all of your help,

Ryan

Thanks a million for the recipes! I'll definitely report on how it turns out. Wish us luck.

Ryan

If you want, I can give you my sugar cookie recipe (tastes just like the "real thing"). For pudding, I now use vanilla almond milk--in an amount less than the regular milk called for.

That would be great! I really appreciate it.

Patti's idea sounds really good. I have a fruit pizza recipe in my Bette Hagman cookbook that my whole family has liked. If you want, I'll be happy to type it up for you.

That would also be great if you have the time. We could use all of the ideas we can get.

Thanks so much. I hate to be a typical guy but I don't know much about baking -- I could use all the help I can get. I sincerely appreciate people taking the time to help me and Alex out.

Ryan

Thanks so much for the ideas and information. The recipes are great - knowing what we need to buy will make our first trip to buy gluten-free baking products a little less scary and confusing. The ideas to replace the cream cheese are great too! I think we might actually be able to do this. I'm certainly not an expert baker but Alex is pretty good and this whole gluten free experience has definitely improved my overall cooking skills.

Thanks,

Ryan

Hi, I was wondering if anyone could help me with advice/tips for making a gluten-free fruit pizza. Alex has her heart set on making one for a small get-together we're having but we have no idea how to start. We've made it before the Celiac diagnosis but this is our first foray into gluten-free baking.

Of course the fruit will be okay but beyond that we are kind of lost. Do we need to order gluten-free "flour" online? And Alex is still dairy free so is there anything we could use instead of cream cheese for the pizza "paste" to stick the fruit onto the pastry crust?

Any help at all (even the most basic ideas!) would be of great help to us. I'm really hoping the thought of gluten-free baking isn't impossible. Alex is just starting to feel well enough to do this type of thing so I'm hoping we can figure it out and have some success.

Thanks,

Ryan

Just wanted to say that my fiancee found some relief from nausea by sucking on something cold. We usually froze Pedialyte into ice cubes and then crushed them up a bit. Not sure why it worked but it really helped to keep her from throwing up sometimes.

If you're really nauseated, you could always try prescription anti-nausea meds. When my fiancee was really sick her doctor prescribed a combo of Zofran and Reglan that was VERY effective. They had some weird side effects (nightmares, agitation, etc.) but honestly it was worth it.

I hope you can find something that helps,

Ryan

Just wanted to post that the tension in Alex

Thanks for the comments. It's good to know that others have had similar experiences although I guess that is a sad fact. I'm trying not to obsess about the incident but every time I think about it I get very angry. Alex is very distraught about it and stressed to the point that it's getting to her stomach. She was up sick last night and is having trouble eating today.

I talked to Alex's dad a bit today and he's not ready to forgive and apologize. I think with time he might be ready to talk to his brother and sister in law and patch things up. He's still too irate about the situation right now -- his Irish temper as Alex says. He's just so fiercely protective over his Alexandria, especially since she's been sick.

Thanks again for the comments. It's comforting to know that we're certainly not the first to go through this. I'm just trying to keep Alex's mind of the whole ordeal for now. And you can be certain that between me, her dad and big brother, Alex will always be protected. She's got her own little posse.

Ryan

We went to a family function this afternoon/evening at Alex

Hi,

Today is Alex's birthday and I just started panicking that candles might have gluten in them. We're not having a cake or anything but I still want to stick the candles in something for her, like her baked potato or something. I threw out the box the candles came in awhile ago. Does anyone know whether or not candles have the possibility of gluten in them or are they entirely wax?

Thank you,

Ryan

I get awful pain in the stomach and do get some relief from that from Pepto Bismal.

Just wanted to thank you for that suggestion. I ran out to get some for Alex to try and it helped to soothe her stomach discomfort and I think it may have helped slow her intestine down a little bit. After taking it, she's been asleep for 4 hours and counting which is the longest she's stayed asleep without her upset stomach waking her up since the glutening two days ago.

We were ready to try some left over Reglan she had even though it caused some unpleasant side effects but it looks like we might not have to go there now. I'm not sure why we didn't think to try Pepto Bismol before. Thanks for sharing your wisdom.

Ryan

Does gluten effect the whole GI tract or is it just confined to the small intestine? I know that the villi are only in the small intestine so that is where the damage is but can it cause inflammation of other parts of the GI tract? Just wondering because since Alex

Thanks for letting me know that the anxiety and agitation are somewhat typical symptoms of gluten ingestion. I guess I should never underestimate the evil power of gluten. I thought Alex's symptoms were confined to GI issues but I guess not. The combination of exhaustion and insomnia seems particularly evil and unfair.

I'm hoping the effects don't last too long and that it is a long, long time before she gets glutened again. We had done so well had avoiding gluten for almost 5 months! Thanks again, it's good to know what she's going through is "normal".

Ryan

I

I'm almost certain that Sodium Cocoyl Glutamate is not gluten related. I was worried about the word glutamate too when we were trying to figure out what was safe when my fiancee was first diagnosed. I had no idea and was worried since glutamate sounds so similar, like it could be derived from gluten or something! My (smarter than me ) fiancee was pretty confident that glutamate was entirely different that gluten. I think she said glutamate is an amino acid whereas gluten is a glycoprotein.

So I'm quite confident that Sodium Cocoyl Glutamate is a non-issue gluten-wise but don't take my word as the gospel; I am still learning too.

Ryan

Hi, my fiancee (who has Celiac) has been bothered with a bad taste in her mouth quite a bit since she first got sick with Celiac symptoms. It seems like it has been caused by different things at different times.

The things that we found to possibly causing the problem for her were:

• when she was throwing up a lot (mostly pre-diagnosis) for obvious reasons
  
• when she was on an antibiotic that gave her a really gross taste in her mouth
  
• recently she had oral thrush (yeast infection in her mouth) that gave her a yucky taste in her mouth and also caused white patches in her mouth/tongue
  
• I think when she gets dehydrated she also gets a bad taste in her mouth, maybe just from having a really dry mouth
  

I don't know if any of these apply to your son but I just wanted to let you know what we think the culprits were in our case so you could see if there was possibly a similar cause with your son. I hope you guys can figure out what is causing it.

Good luck,

Ryan

Thanks for the input everyone. Sounds like she needs to get her thyroid checked to rule out any problems. I