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Nathan's mom

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Nathan's mom Apprentice
Nathan's mom
Posted

Hello,

I've been reading posts here for a few months and have learned a lot! Now it's time to join. Thanks for all who are so open and helpful. This is probably a longer than usual intro. but I usually write a novel now and then :rolleyes:

My son will be 4 in August and we had him tested in Jan. for gluten/celiac. His endomysial was normal, but the TTG was high (as well as another less specific antibody). Sorry, can't remember all the details. I had him on a restricted diet (no additives, preservatives) and then tried an elimination diet (3 separate tries) last fall. I did that in order to see if any sleep disturbances, constipation, and behaviors would clear up. Well, the third time I tried the elimination diet (FAILSAFE), he looked horrible! I finally said that's enough and then found out why I wasn't getting anywhere. I can't even begin to tell you how much whole wheat this and that he was eating. I'm trying not to feel guilty for possibly causing this :(

He's been gluten-free since the beginning of Feb. It took 4 full weeks for his poop (which had become worse than usual) to get better, he is now sleeping better, but the behavior is another story. We are having allergy testing next Weds. and I will be having an ELISA food sensitivity test done. His immune system seemed to go crazy at the same time the gluten thing flared up while doing the elim. diet. He also got itchy eyes, itchy skin, and lots of throat clearing at that time. The itchy skin comes back from time to time and he still clears his throat a lot. I have no doubt he has several food sensitivities (can't figure out which). He is dairy free right now also.

Anyway...we met with a GI doc last Mon. He was frustrated that we were not advised to see him first before taking him off gluten. When my husband and I left his office we were pretty much in agreement to put him back on gluten in order to have a biopsy done. We went out for Chinese food. He had rice, shrimp, and we gave him a few bites of meat with different sauces (had to be gluten in some of that). Mind you, I have been completely strict since the blood test. That night he had nightmares, crying out, on the floor clawing at his blanket. WOW!! Opened my eyes to the power of gluten. Needless to say, I will not go through with putting him back on the gluten. Besides, it seems like his immune system is beginning to get a tiny bit better. I read all the time that people have inconclusive biopsies anyway. Perhaps my husband will agree to Enterolab.

The big AHA! though was how powerful a little gluten is. :ph34r: I am now looking at excluding anything that doesn't state "gluten free". With the reaction he had it is possible that just a bit of cross-contamination affects him (in his brain I believe more than anywhere). My son is a busy boy and goes through periods of hyperness/defiance/weepiness. It seems like we have more bad days than in the past. That part is hard for us because it is such a big change anyway in the beginning.

Hopefully the behavior will clear up when we find out any other foods that are contributing. By the way, my son is over the 100th percentile for height and weight, and has rarely complained of stomach pain. He has always had problems with constipation rather than diarrhea. This caused the first allergist I saw after the blood test look at him and declare, "He's not Celiac". (idiot) My son was so bad at that point he was running through the office like Superman and not listening to a word I said. I can only imagine what the allergist thought of me.

Any comments on how long it takes to "get better" as far as behavior is concerned are appreciated.

Thanks for reading my novel!

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blueeyedmanda Community Regular
blueeyedmanda
Posted

Hi,

Welcome to the board. You will find a lot of support here. It is one of the best things I have ever found. Hope you find some answers you are looking for. Good Luck!

NoGluGirl Contributor
NoGluGirl
Posted
Hello,

I've been reading posts here for a few months and have learned a lot! Now it's time to join. Thanks for all who are so open and helpful. This is probably a longer than usual intro. but I usually write a novel now and then :rolleyes:

My son will be 4 in August and we had him tested in Jan. for gluten/celiac. His endomysial was normal, but the TTG was high (as well as another less specific antibody). Sorry, can't remember all the details. I had him on a restricted diet (no additives, preservatives) and then tried an elimination diet (3 separate tries) last fall. I did that in order to see if any sleep disturbances, constipation, and behaviors would clear up. Well, the third time I tried the elimination diet (FAILSAFE), he looked horrible! I finally said that's enough and then found out why I wasn't getting anywhere. I can't even begin to tell you how much whole wheat this and that he was eating. I'm trying not to feel guilty for possibly causing this :(

He's been gluten-free since the beginning of Feb. It took 4 full weeks for his poop (which had become worse than usual) to get better, he is now sleeping better, but the behavior is another story. We are having allergy testing next Weds. and I will be having an ELISA food sensitivity test done. His immune system seemed to go crazy at the same time the gluten thing flared up while doing the elim. diet. He also got itchy eyes, itchy skin, and lots of throat clearing at that time. The itchy skin comes back from time to time and he still clears his throat a lot. I have no doubt he has several food sensitivities (can't figure out which). He is dairy free right now also.

Anyway...we met with a GI doc last Mon. He was frustrated that we were not advised to see him first before taking him off gluten. When my husband and I left his office we were pretty much in agreement to put him back on gluten in order to have a biopsy done. We went out for Chinese food. He had rice, shrimp, and we gave him a few bites of meat with different sauces (had to be gluten in some of that). Mind you, I have been completely strict since the blood test. That night he had nightmares, crying out, on the floor clawing at his blanket. WOW!! Opened my eyes to the power of gluten. Needless to say, I will not go through with putting him back on the gluten. Besides, it seems like his immune system is beginning to get a tiny bit better. I read all the time that people have inconclusive biopsies anyway. Perhaps my husband will agree to Enterolab.

The big AHA! though was how powerful a little gluten is. :ph34r: I am now looking at excluding anything that doesn't state "gluten free". With the reaction he had it is possible that just a bit of cross-contamination affects him (in his brain I believe more than anywhere). My son is a busy boy and goes through periods of hyperness/defiance/weepiness. It seems like we have more bad days than in the past. That part is hard for us because it is such a big change anyway in the beginning.

Hopefully the behavior will clear up when we find out any other foods that are contributing. By the way, my son is over the 100th percentile for height and weight, and has rarely complained of stomach pain. He has always had problems with constipation rather than diarrhea. This caused the first allergist I saw after the blood test look at him and declare, "He's not Celiac". (idiot) My son was so bad at that point he was running through the office like Superman and not listening to a word I said. I can only imagine what the allergist thought of me.

Any comments on how long it takes to "get better" as far as behavior is concerned are appreciated.

Thanks for reading my novel!

Dear Nathan's Mom,

I was not surprised at all to hear of how your child reacted severely to gluten. It can be very powerful psychologically on some individuals. It has been found that it transfers into an opiate in some individuals. This can cause psychotic behavior, hallucinations, and numerous other mental problems. It really is frightening what gluten does to the body and brain! I hope your little boy feels better soon!

Sincerely,

NoGluGirl

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