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Glutenizing...

shaleen

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shaleen Rookie
shaleen
Posted

Not sure if that is what you would call it but I just got back from the GI doc who wants me to put my 18 month old back on gluten for 2 months before they'll do the endoscopy. I was wondering how I'm going to deal with all the ill side effects he gets for a whole 2 months!!! Any help would be appreciated...he usually gets diarrhea and mad rashes. Plus they are putting him on a antihistamine to increase his appetite!

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Dixiebell Contributor
Dixiebell
Posted

I would call it torture. Did your doc tell you to take him off gluten before the endo ? I bet if that doc was having problems, he wouldn't go back to eating gluten. Are you wanting the endo to see if maybe something else could be going on too? If not, if it was me having to make that decision, I would keep him gluten free. Keeping him gluten free will not mask other problems he might still be having or may have in the future. My son is 9 and we decided to try the diet instead of the endo because the tests can miss the damaged areas or there might not be enough damage to start with. His blood tests were negative too. Best wishes.

SGWhiskers Collaborator
SGWhiskers
Posted

I'm not a mamma yet, but I wouldn't put a developing child on gluten or through the endoscopy just for the label. Why did the doc say he/she wanted the endo done? Are they looking for confirmation, or suspicious of something more. Just because medicine CAN do something, does not mean that it SHOULD do it. With that said, there may be very good reasons for doing the test now.

MacieMay Explorer
MacieMay
Posted

Not sure if that is what you would call it but I just got back from the GI doc who wants me to put my 18 month old back on gluten for 2 months before they'll do the endoscopy. I was wondering how I'm going to deal with all the ill side effects he gets for a whole 2 months!!! Any help would be appreciated...he usually gets diarrhea and mad rashes. Plus they are putting him on a antihistamine to increase his appetite!

I feel your pain. I just went through it. It's heartbreaking to give your child something that you know could be causing them harm. But...if you think he has celiac then he has to be on the gluten for you to get the diagnosis. He is young and any damage done to his small intestine will surely heal and he will be OK. The antihistamine will help with rashes. It is very difficult to diagnosis kids under two because they have not consumed enough gluten to cause extensive damage or built up enough antibodies in the blood to show up in blood work. I believe my 18 mos daughter has DH, her rash is not responding to antihistamines, hydrocortisone, or moisturizer. It has all the typical characteristics of DH. A few weeks back she had a endo and a colon( to rule out hidden food allergies ) and everything has come back negative (including two celiac panels). I had her on and off the Gluten before hand, eventhough I knew for test purposes she should be on. But her skin was getting so bad, I just couldn't bare to see it.

Try to take it one day at a time. Down the road you will be thankful that you have a correct diagnosis. I hope this helps.

my3monkees Rookie
my3monkees
Posted

If you know your child reacts to gluten. I wouldn't put him thru 2 months of torture. He is too young to even understand why he feels so bad. My then 11 yr. old said she would starve herself before she would go back to eating gluten, so ped. and I agreed an official diagnoses wasn't necessary, it wasn't going to change anything. Official diagnosis or not, she can't eat gluten. As she gets older, if she wants an official diagnoses, she can make that decision. HTH Wish you well!

THernandez Newbie
THernandez
Posted

Not sure if that is what you would call it but I just got back from the GI doc who wants me to put my 18 month old back on gluten for 2 months before they'll do the endoscopy. I was wondering how I'm going to deal with all the ill side effects he gets for a whole 2 months!!! Any help would be appreciated...he usually gets diarrhea and mad rashes. Plus they are putting him on a antihistamine to increase his appetite!

Yeah, you know what? They wanted me to do that with my son too and I said no freaking way! My kid was so sick when he was on gluten that I wasn't even going to consider it. Her reasoning was that without the biopsy (which in itself seemed like a tortuous thing to do to a toddler) I couldn't get a definitive diagnosis. My question to her was, if the gluten-free diet made every symptom go away, what good is a definitive diagnosis. She said, "So you can write off the difference in the price of gluten-free food off your taxes." Seriously, that was the best reason she could offer me to put my kid on gluten. I never went back to see the pediatric GI again.

As far as the antihistamine goes, it does the opposite to me, it decreases my appetite. That seems kind of odd to me.

shaleen Rookie
shaleen
Posted
  • Author

So yes, I think the pediatrician is deciding to call it a day with my little one. He has rashes covering his arms and legs...just 3 days after starting the gluten. He just started with an ear infection and has been smashing his head on anything and everything. If this continues, she said to discontinue the gluten on Thursday of this week. THanks for everyone's comments and help on my LO!

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SGWhiskers Collaborator
SGWhiskers
Posted

Get him to a good dermatologist and have those rashes biopsied for DH. I think they have to do just outside or the edges of the rash. DH is as good as a celiac diagnosis. Go to the DH part of this forum and I suspect you will find the information you need. A little skin biopsy is nothing compared to 2 months of gluten and an intestinal biopsy. Consider the rash an easy way out of your dilemma. As a bonus, if it is DH, the rash will serve as a good motivator in the teenage years for staying gluten free.

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    • trents
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By trents · Posted

      This is a common experience across the board with various brands of gluten-free bread products. Prices go up, size goes down. Removal of the egg component may be for the purpose of cost-cutting related to bird flu supply shortages or it may be catering to those with egg allergy/sensitivity, fairly common in the celiac community.
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      Living with Coeliac Disease since birth, Bread has always been an issue, never too nice, small slices and always overpriced, But Sainsbury's Free From White Sliced Bread seemed to me to be an exception with it's large uniform 12 x 12cm slices that had the bounce, texture and taste of white bread even after toasting with no issue that it was also Milk Free. Unfortunately Sainsbury's have changed the recipe and have made it 'Egg Free' too and it has lost everything that made the original loaf so unique. Now the loaf is unevenly risen with 8 x 8cm slices at best, having lost it's bounce with the texture dense and cake like after toasting resembling nothing like White Bread anymore. Unsure as to why they have had to make it 'Egg Free' as the price is the same at £1.90 a loaf. Anyone else experiencing the same issue with it? - also any recommendations for White Bread that isn't prescription? / Tesco's / Asda's are ok but Sainsbury's was superior.
    • Mari
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      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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