How Quickly Would A gluten-free Diet Start Healing Damage Done To The Vili

[girlfromclare]

my son is doing really well on the diet. amazing in fact... he is like a different child. however, even when I am (pretty) certain that he hasnt been glutened we do have reactions (always after his dairy/caesin and gluten free ice cream actually - or recently after the icing on a gluten-free cake that Id made very carefully) which leads me to believe that things with high levels of sugar really causes reactions exactly the same as being glutened... the crying, the distress, the screaming, the pains in the tummy, the lashing out etc etc etc... I have noticed this in the past with other sugary foods and once with an antibiotic that contained huge amounts of fructose and sucrose. basically, although I am in no personal doubt about him being a celiac (even with negative bloods) I believe there may be malabsorption of sugars etc due to the damage of his villi... has anyone got any opinions on this? My son has been succesfully gluten free for about six or seven weeks... doing wonderful and I know that one would be tempted to say just keep him off anything sugary but I need something more solid than this as Its already hard keeping him off all the things he likes without saying, by the way, sugar has to go as well.. I am going to set up a consultation with a gastroenterologist and have a feeling he will suggest a biopsy... will it make a big difference that he has been gluten-free for that many weeks? I dont want to put him back on gluten at all!!! Esp not that he is now in school and doing very well... but I just feel I need more of an explanation....

thanks in advance

hope everyone had a nice xmas and happy new year to all.

liz (ireland)

[Jestgar]

I don't think there is any way to know for sure how healed your son's villi are, except by looking. He might just have trouble with cane sugar. Try making him something sweetened with maple syrup or beet sugar.

[Ursa Major]

Liz, six or seven weeks off gluten may have healed nearly all of the damage to his villi, because children heal incredibly fast. Meaning, that at this point a biopsy would be completely pointless. In order to get a positive biopsy, you'd have to put him back on eating a lot of gluten (about four slices of bread a day) for at least six months.

Sugar is poison for everybody, but more so for some people than others. That's a proven fact. I am afraid your son is simply intolerant to sugar, gluten and dairy.

One of my daughters has had testing for intolerances, and she tested intolerant to sugar and wheat. One of my son-in-laws tested intolerant to sugar as well. He gets terrible eczema all over from sugar, plus he gets stomach upsets from it as well, and I hear that as a kid, he refused to eat candy, because it made him feel completely out of control.

I know it is hard. But the sugar will have to go. And don't substitute with things like Aspartame or Splenda, as those have been proven to be very toxic as well.

My daughter sweetens cakes, cookies, muffins (really, everything she makes or my son-in-law eats that needs sweetening) with honey or maple syrup. You can also use unsweetened apple sauce in muffins, also there is Stevia and some sugar made from figs (I forget what it's called).

Try those substitutes. You can use honey on cereal, too. Just use about half the amount of the sugar the recipes call for, because honey is about twice as sweet as sugar.

[girlfromclare]

Yes I felt that might be the case. I dont think I can put him back on gluten - I dont want to put him through the pain and - dare I say it - from a selfish point of view, I dont think I could handle the months of torture.... hope that doesnt sound horrendous...

anyway, I agree with you. Sugar is most definitely the problem... I feel so sorry for him.... some things dont bother him but certainly anything with obviously high sugar content does cause serious problems... I will take your advice about honey... i actually wasnt sure if i could use honey or not... delighted that i can...

Thanks so much for the advice.

Happy new year... x x

[shayesmom]

Yes I felt that might be the case. I dont think I can put him back on gluten - I dont want to put him through the pain and - dare I say it - from a selfish point of view, I dont think I could handle the months of torture.... hope that doesnt sound horrendous...

anyway, I agree with you. Sugar is most definitely the problem... I feel so sorry for him.... some things dont bother him but certainly anything with obviously high sugar content does cause serious problems... I will take your advice about honey... i actually wasnt sure if i could use honey or not... delighted that i can...

Thanks so much for the advice.

Happy new year... x x

You can also use agave nectar as a substitute. I use it in baked goods and to sweeten lemonade or other drinks. I've also found that when used in breads, the bread rises better as it is not as sticky and heavy as honey. Plus, some varieties are very low on the glycemic index (at 16 or 17)....much lower than sugar, honey, maple syrup, etc.. The only thing lower is stevia, if you don't mind the licorice aftertaste. Amazon has organic agave nectar at some pretty good prices (half off or more from the average health food store). And I've even seen some fruit burst agave sticks as an alternative, "healthy" candy. It's a very nice alternative to sugar.

[Ursa Major]

Yes I felt that might be the case. I dont think I can put him back on gluten - I dont want to put him through the pain and - dare I say it - from a selfish point of view, I dont think I could handle the months of torture.... hope that doesnt sound horrendous...

Why would you think that sounds horrendous? That sounds very reasonable to me. There is no way I would torture my kid for nothing, or put myself through the agony of watching my child suffer (or feeling guilty for purposely making him sick).

I only gave the info on how you might get a positive biopsy, so you had the choice. But you already know that gluten is a huge problem, why make him sick again? It would be cruel.

The agave nectar sounds like a great choice, I will let my daughter know about it! I bet it's high in salicylates though, so I can't try it (honey is poison to me, too, I can only use maple syrup).

[shayesmom]

The agave nectar sounds like a great choice, I will let my daughter know about it! I bet it's high in salicylates though, so I can't try it (honey is poison to me, too, I can only use maple syrup).

I couldn't tell you if the agave was high in salicylates or not. I can't imagine that it would be any higher than maple syrup as it is also a plant-derived sap. Hmmm....I haven't found any info on it either. I only know that it is also lower on the glycemic index than maple syrup. It's even deemed safe for diabetics. If you find out how it ranks, would you mind sharing? I'd be curious as I do run into a lot of people with different food intolerances. Since I end up having many of them over for meals and snacks...I do like to be able to cook something that won't make them sick. I haven't run into the salicylate problem yet....but I'm sure it's only a matter of time. lol!

My dd doesn't do too hot with sugar and is okay with honey...but I really prefer the agave as it seems to make the least amount of difference in regards to behavior and symptoms. I have several relatives in the maple syrup industry so we also have great access to pure maple syrup. At this point, the simpler the food, the better (IMO).

[celiacgirls]

Could he have a problem with soy? We've discovered my daughter has a problem with soy as well as gluten and casein. I kept thinking she was being cc'd but finally realized there was soy involved in many cases. The dairy free ice cream and the frosting probably both had soy unless you purposely eliminated it.

[mom-to-claire]

One of my daughters has had testing for intolerances, and she tested intolerant to sugar and wheat. One of my son-in-laws tested intolerant to sugar as well. He gets terrible eczema all over from sugar, plus he gets stomach upsets from it as well, and I hear that as a kid, he refused to eat candy, because it made him feel completely out of control.

How is one tested for intolerances??? I am sure my daughter is intolerant to more than gluten but she barely eats anything now so I can't even do an elimination diet or all she'd get is water and breastmilk and that has to stop soon as I am going back to work. She is almost a year and while she was doing really well for 6-7 weeks, things have gotten worse. Coincidentally she is worse since I decided to go gluten free as well due to the breastfeeding. Is it a coincidence or what is happening. sorry this doesn't really fit in with the original post but I had to ask.

[girlfromclare]

Why would you think that sounds horrendous? That sounds very reasonable to me. There is no way I would torture my kid for nothing, or put myself through the agony of watching my child suffer (or feeling guilty for purposely making him sick).

Yes your right, Of course it is reasonable to not want to watch your child suffer and to not want to be the reason that he is suffering, but I guess what I mean by my selfishness was that I personally am under a lot of stress and strain as a result of the constant crying and the kicking and screaming episodes. I am physically and emotionally drained... sometimes I find just regular daily life, a trial... things are better now that he is improving on the diet...and hence my serious reluctance to go back to what life used to be like... apart from not wanting my son to be sick any more... I also dont think my mental state could take the months of stress... hiding myself in a room and letting my husband deal with the episodes is not an uncommon occurrence in our house. I try so hard and I do love my children so much but amnt the most naturally maternal person in the world, and this whole thing has made it all much harder for me. However, I generally push these feelings aside (dont know why Im going on about them now... makes me sound like a real whiner when normally id never speak of this to anyone) My son is extremely important to me and I want him to be better more than anything... I guess life is just getting on top of me at the moment.. sorry x x and thanks for all the advice... its much much appreciated...

liz x x

[Nic]

Just to point out, my cousin who is not a Celiac is a twin. As a child he had a terrible intorlerance to sugar. It caused him to be very aggressive. As a toddler he was dragging his twin brother around by his hair. His mother had to make all of their desserts will other sweeteners rather than sugar. The behavior stopped completely after the diet change.

Nicole

[Ursa Major]

Liz, you're not selfish or a whiner. Having a kid act out the way your son does would be very emotionally draining. If you're worn out, you won't have the energy to be a good mother. There is only so much you can handle without breaking down.

I know I would feel the same way as you. You need to look after yourself, in order to be able to look after your kids.

[Jestgar]

I have no kids and I've always thought that Moms are amazing. Now, reading about Moms with kids that have issues, I'm even more amazed.

Whine away. I suspect that everyone with kids will understand, and everyone without kids is too dazzled by your strength and patience to even realize it's a whine. We just think it's another one of those tools that amazing moms use to keep themselves grounded.

[girlfromclare]

thanks everyone... such kind words bring tears to my eyes.. happy tears though!! this kind of support should be bottled and sold to mothers everywhere...

deep breaths and chin up I guess...

thanks again... lots of love x x x