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Frustration

Roda

By Roda
in Coping with Celiac Disease

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Roda Rising Star
Roda
Posted

I am getting a little frustrated. I am getting a lot of resistance since I put my youngest son gluten free on 11/19. My husband is on board with the three month trial, but is starting to show some frustration. I'll agree that it is a little more challenging for my little man than me especially since he wants things that I just don't eat. So I find myself checking more things. I think Dad's frustration is coming from that he didn't percieve him as having any symptoms. He is equating symptoms to purely GI in nature. He feels that at least that is tangable. He doen't want to impose this on him if he isn't having "symptoms." I have had the discussion that people can be asymptomatic, but show antibodies and damage in their gut. I also told him there is really no other reason for him to have a positive IgA ttg test since it is specific to celiac. I just can't ignore that! He is also wondering what happens when we challenge him after three months. He wants to know how long to decide if he can keep eating gluten. I told him that everyone is different. Even so I still can't ignore his positive test. He thinks that if he starts getting sinus issues I'll jump the gun and say it's the gluten. Well, he started vomiting on Saturday and I didn't immediatly think "gluten." I thought he might have strep or a virus. He still thinks that anyone can become sensitive to foods if they don't eat them for a long time. I can't seem to get him to understand/accept that if someone doen't have a problem with gluten/particular foods then they shouldn't have a problem if they start to consume it again. Ugg! I'm trying to make this as positive as I can for my son. I am finding that he all the sudden doesn't like things that I make. These are things that I have made repeatedly over the last two years and he loved them. I think he is trying to have some measure of control.

Now I have to admit I havn't seen miraculous results, but I have noticed subtle ones. He doesn't have the hunger spike that he did for the first 1 1/2 weeks after going gluten free, after he has a bm you don't choke on the fumes in the bathroom and he doesn't seem as obsessive over some of the things he was over. My husband says it has nothing to do with his diet that he has just learned to get over it. I also think he seems easier to reason with. Could I be reading too much into this? My husband is being very supportive of both of us and is being extra careful about the cc, so I think we have figured that out to work for both of us. I don't know if he could handle if my oldest son had to be gluten free also. I am getting tired of having the same old discussion over and over. I don't want to seem like I am preaching or coming off wrong. I know it at times it seems unfair to him (hubby), but we can't make celiac go away. I really don't want this to become an issue between us.

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sahm-i-am Apprentice
sahm-i-am
Posted

I am getting a little frustrated. I am getting a lot of resistance since I put my youngest son gluten free on 11/19. My husband is on board with the three month trial, but is starting to show some frustration. I'll agree that it is a little more challenging for my little man than me especially since he wants things that I just don't eat. So I find myself checking more things. I think Dad's frustration is coming from that he didn't percieve him as having any symptoms. He is equating symptoms to purely GI in nature. He feels that at least that is tangable. He doen't want to impose this on him if he isn't having "symptoms." I have had the discussion that people can be asymptomatic, but show antibodies and damage in their gut. I also told him there is really no other reason for him to have a positive IgA ttg test since it is specific to celiac. I just can't ignore that! He is also wondering what happens when we challenge him after three months. He wants to know how long to decide if he can keep eating gluten. I told him that everyone is different. Even so I still can't ignore his positive test. He thinks that if he starts getting sinus issues I'll jump the gun and say it's the gluten. Well, he started vomiting on Saturday and I didn't immediatly think "gluten." I thought he might have strep or a virus. He still thinks that anyone can become sensitive to foods if they don't eat them for a long time. I can't seem to get him to understand/accept that if someone doen't have a problem with gluten/particular foods then they shouldn't have a problem if they start to consume it again. Ugg! I'm trying to make this as positive as I can for my son. I am finding that he all the sudden doesn't like things that I make. These are things that I have made repeatedly over the last two years and he loved them. I think he is trying to have some measure of control.

Now I have to admit I havn't seen miraculous results, but I have noticed subtle ones. He doesn't have the hunger spike that he did for the first 1 1/2 weeks after going gluten free, after he has a bm you don't choke on the fumes in the bathroom and he doesn't seem as obsessive over some of the things he was over. My husband says it has nothing to do with his diet that he has just learned to get over it. I also think he seems easier to reason with. Could I be reading too much into this? My husband is being very supportive of both of us and is being extra careful about the cc, so I think we have figured that out to work for both of us. I don't know if he could handle if my oldest son had to be gluten free also. I am getting tired of having the same old discussion over and over. I don't want to seem like I am preaching or coming off wrong. I know it at times it seems unfair to him (hubby), but we can't make celiac go away. I really don't want this to become an issue between us.

I was diagnosed with Celiacs and had my two daughters tested for the disease and the genetic markers. My youngest, the one with the GI problems tested positive for the genes but both girls' bloodtest came back negative. E, my youngest, chose to go gluten free to see if it helps. She's 11. A few months later she is feeling better. It takes time for some to see positive changes. Your son may be going through gluten withdrawls - they are significant sometimes and can affect moods. And yes, your son may want some control - give him choices, teach him to cook gluten free - goodness knows he's going to need to learn in the future!

As for dear hubby - mine is somewhat the same. He is supportive of me, I guess since I have a diagnosis. For E, he thinks she has an intolerance, therefore, in his mind, she can tolerant a certain amount before showing symptoms He wants to find what that level is, so she doesn't have to be so fanatical about staying away from gluten. I think 'why bother' - she's 11 for crying out loud. Why not just stay gluten-free and not have to worry about how much she's had? anyway, husband is going through his own form of grieving, dealing, emotional roller coaster as well. My diagnosis has changed our family whether I want to or not. It is hard for the gluten free people as well as the others. And we, as parents, don't want our children to have issues, suffer and be perceived as 'not normal'. That is universal. They probably don't want their child to have it and are in a bit of denial. Alot of moms out there are in charge of their kids health for a reason! ;)

I'm sorry you are going through this. There is a section on this forum that is for family members of Celiacs - they may have more insight, too.

Take care!

Roda Rising Star
Roda
Posted
  • Author

I was diagnosed with Celiacs and had my two daughters tested for the disease and the genetic markers. My youngest, the one with the GI problems tested positive for the genes but both girls' bloodtest came back negative. E, my youngest, chose to go gluten free to see if it helps. She's 11. A few months later she is feeling better. It takes time for some to see positive changes. Your son may be going through gluten withdrawls - they are significant sometimes and can affect moods. And yes, your son may want some control - give him choices, teach him to cook gluten free - goodness knows he's going to need to learn in the future!

As for dear hubby - mine is somewhat the same. He is supportive of me, I guess since I have a diagnosis. For E, he thinks she has an intolerance, therefore, in his mind, she can tolerant a certain amount before showing symptoms He wants to find what that level is, so she doesn't have to be so fanatical about staying away from gluten. I think 'why bother' - she's 11 for crying out loud. Why not just stay gluten-free and not have to worry about how much she's had? anyway, husband is going through his own form of grieving, dealing, emotional roller coaster as well. My diagnosis has changed our family whether I want to or not. It is hard for the gluten free people as well as the others. And we, as parents, don't want our children to have issues, suffer and be perceived as 'not normal'. That is universal. They probably don't want their child to have it and are in a bit of denial. Alot of moms out there are in charge of their kids health for a reason! ;)

I'm sorry you are going through this. There is a section on this forum that is for family members of Celiacs - they may have more insight, too.

Take care!

Thanks for taking the time to respond. I think you are right about not wanting their child to have a problem and feel "different." I couldn't have said it better. I guess since I am diagnosed I look at it differently.

As for my little boy, I found out why he doesn't want to eat. He has another bad sinus infection and he vomited on Sat and again last night. Went for a culture to find out what antibiotic to put him on. They are checking him for mono and ebv too.

Skylark Collaborator
Skylark
Posted

I'm a little confused as to what your doctor thinks your child has if it isn't celiac. How did your doctor explain the positive TTG IgA result? If I had that on a kid, I'd have him off gluten and be done with it because if he's not celiac, he's probably latent and gluten is reasonably likely to push him into being celiac.

Roda Rising Star
Roda
Posted
  • Author

I'm a little confused as to what your doctor thinks your child has if it isn't celiac. How did your doctor explain the positive TTG IgA result? If I had that on a kid, I'd have him off gluten and be done with it because if he's not celiac, he's probably latent and gluten is reasonably likely to push him into being celiac.

My youngest has been gluten free since 11/19. NP feels likely celiac but won't officially diagnose him. He wrote a note for school "suspected celiac pending GI consult." I believe he is very early and felt he might have an inconclusive biopsy so opted to put him on the diet. I think hubby is just trying to mentally come to terms with it. He has only fed him something questionable once. He is making sure he is safe, but is upset about it also. I wasn't to thrilled about it either, but I look at it differently than him is all. A lot of his questions were related to when we decide to challenge him. We havn't really had to discuss it in the last couple of days. I think he is finaly coming to grips with it. Also, I think the time of year is playing a big part in hubby's emotions/mood.

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