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Back On Gluten A Q?

Maggs05

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Maggs05 Rookie
Maggs05
Posted

Ds is back on gluten and has been for 2 weeks. He is going to be tested (blood test) in 4 weeks. His first day back on a regular diet he was crying and begging me not to make him eat regular food he was cramping so bad. His stools softened but they never developed into diarrhea. Then he had 3 days of no symptoms what-so-ever. Then he began cramping again, but not severe.

So for the past 2 weeks he has gone between being symptom free and having cramps. He still has not developed diarrhea. He has lost a 1/2 lb thought. He has had major mood changes though, like he had before going gluten free.

So my question is, does he have celiac (I realize that only testing can determine that)? Or can a person with Celiac be on gluten and have intermittent symptoms, having good days and bad?

I think I am just holding out hope that he indeed does not have it. Am I reaching, or am I just not well informed about the variety of ways people suffer from celiac?

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MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

There are so many reactions to Celiac Disease: tummy aches, poop problems, migraines, neurological issues, rashes, brain fog, vomiting, mood swings, tiredness, etc. I can't even list them all! You also do intestinal damage even if there are no outward symptoms. Just wait and see what the test results say and factor in how your son is off gluten. It's all about what's best for him! Good luck!

DanAbimytwomiracles Newbie
DanAbimytwomiracles
Posted

Why are you making him eat gluten? I don't get it. If you know he does better on a gluten-free diet, why do this just to get a piece of paper with a positive on it? An elimination diet is an EXCELLENT way to determine if a person has gluten sensitivity, and the only people who don't accept that are doctors who insist on anesthesia and cutting out pieces of intestine for proof.

And, yes, there are tons of different gluten symptoms. My kdis have atypical reactions: constipation, gas and bloating, pooping more oftem but not diarrhea, stomacha nd joint pains, rashes, and major behavior issues.

Maggs05 Rookie
Maggs05
Posted
  • Author
Why are you making him eat gluten? I don't get it. If you know he does better on a gluten-free diet, why do this just to get a piece of paper with a positive on it? An elimination diet is an EXCELLENT way to determine if a person has gluten sensitivity, and the only people who don't accept that are doctors who insist on anesthesia and cutting out pieces of intestine for proof.

I put him back on gluten per Dr.'s orders so that we could do the blood test.

As you say, I do indeed need that piece of paper stating he is positive and yes, I will also have to have part of his intestine cut out as well for proof.

Yes, it is breaking me apart seeing him go through this, yes I do feel horrid doing this to him and thanks for making me feel worse. (If I read the intent wrong in your post, then forgive me, but tone is hard to covey through a screen and I took your post as snarky)

Unfortunately my dh and I are not blessed with having an adequate income to support his dietary needs in order to be gluten-free. With a diagnosis we will qualify for subsidy under the government to supplement our income so as to off set the cost of being gluten-free. But in order to qualify you must have a definitive diagnosis.

Also for school purposes a definitive diagnosis must be in his OSR so that we can have legal verification in case of any issues that may arise at school.

nu-to-no-glu Apprentice
nu-to-no-glu
Posted
I put him back on gluten per Dr.'s orders so that we could do the blood test.

As you say, I do indeed need that piece of paper stating he is positive and yes, I will also have to have part of his intestine cut out as well for proof.

Yes, it is breaking me apart seeing him go through this, yes I do feel horrid doing this to him and thanks for making me feel worse. (If I read the intent wrong in your post, then forgive me, but tone is hard to covey through a screen and I took your post as snarky)

Unfortunately my dh and I are not blessed with having an adequate income to support his dietary needs in order to be gluten-free. With a diagnosis we will qualify for subsidy under the government to supplement our income so as to off set the cost of being gluten-free. But in order to qualify you must have a definitive diagnosis.

Also for school purposes a definitive diagnosis must be in his OSR so that we can have legal verification in case of any issues that may arise at school.

Please don't feel bad about trying to obtain a diagnosis for your son. I am working on getting my son and myself a "piece of paper that says positive" because I feel it is important to have. If we go through too much to obtain an accurate diagnosis, then I will probably just revert to self diagnosis and go on the diet, but I think it will help him cope to have that diagnosis as he grows older.

Although I am not a confirmed celiac, I do have intermitent symptoms...I can go for months with cramps and pain and diarrhea and then have 4-5 days where I feel "normal". My son seems to be the same way. So, I think the 1st poster was right that it effects everyone differently. I also notice that certain foods make me feel worse, different types of bread, etc.

Hope that answers your question. Best of luck, keep us updated on your son. I know it's tough, but you know you are doing your best to get him help he needs :)

nu-to-no-glu Apprentice
nu-to-no-glu
Posted

Just wanted to add that it's tough making parental decisions that we feel are in our kid's best interests. Weaning from a bottle is tough, but we do it b/c we know it's best for them. Don't give up b/c of what other's say. You are at the best forum to get support and I hope you aren't detered b/c of the previous comment.

Maggs05 Rookie
Maggs05
Posted
  • Author
Just wanted to add that it's tough making parental decisions that we feel are in our kid's best interests. Weaning from a bottle is tough, but we do it b/c we know it's best for them. Don't give up b/c of what other's say. You are at the best forum to get support and I hope you aren't detered b/c of the previous comment.

Thank you so much for your supportive response. Your right it is sometimes extremely hard to make decisions about what is in your dc's best interest.

Case in point: My dd from about 8 months of age, started to wake very frequently at night. By 18 months she was waking every hour on the hour. I still nursed and everyone including experts were telling me to stop nursing and let her CIO. I knew something was wrong, and it ended up that dd had a bone tumour. It is extremely painful and I am now so glad that I did not listen to everyone else about letting her CIO and to wean her. Attending to her need for comfort and support, as well as her knowing that I would always be there for her was more important than satisfying other's ideals about child rearing and my lack of sleep. I could not have lived with the guilt of leaving her alone to suffer.

Although I am not a confirmed celiac, I do have intermitent symptoms...I can go for months with cramps and pain and diarrhea and then have 4-5 days where I feel "normal". My son seems to be the same way. So, I think the 1st poster was right that it effects everyone differently. I also notice that certain foods make me feel worse, different types of bread, etc.

Again thank you for answering the OQ. This is what I was looking for.

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ang1e0251 Contributor
ang1e0251
Posted

I don't think it's supportive to criticize the choices that parents have to make. Just because you might have a strong opinion, doesn't mean it's the only right choice. It is appropriate to relate your own experience and then let the poster make their own desicion based on their own best judgement. Later in life we all look back and wish we had done some things differently so your opinion today may have a different slant to you in time.

Maggs05 Rookie
Maggs05
Posted
  • Author
I don't think it's supportive to criticize the choices that parents have to make. Just because you might have a strong opinion, doesn't mean it's the only right choice. It is appropriate to relate your own experience and then let the poster make their own desicion based on their own best judgement. Later in life we all look back and wish we had done some things differently so your opinion today may have a different slant to you in time.

Thank you. I agree.

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