Dad Suspected Celiac

[TCA]

I know so many of you have been through so much to get a diagnosis. I hope you can help me out with your experiences. My father has so many heath issues.

Just to name a few:

Kidney tranplant 22 years ago

9 heart attacks

1 stroke

1 open heart surgery

He also has a lot of possible celiac issues:

undiagnosed (after 7 years of tests) ataxia

undiagnosed SEVERE muscle and joint pain

diabetes

eczema

red face/rosacea

connective tissue disorder - supected to be scleroderma (testing ongoing)

edema

excessive flagulance (sp?)

constipation

SEVERE insomnia (sleeps 10-15 hrs most weeks all his life)

fogginess (also could be attributed to meds)

occasional fevers

constant tissue inflammation

When my kids were diagnosed I started learning about celiac disease and my first thought went to his issues. Since then, I now suspect that I have celiac disease. At my urging he spoke to his family doc about it. He acknowleged that celiac disease could be what started his problems, but said he refused to test him because even if he does have it that the gluten-free diet would throw his body into such a tailspin that it would kill him. His nerologist was set to have him tested, until he spoke to the GP and agreed that he might have a point about the diet being disasterous for him. I'm pulling my hair out because we've been searching and praying for an answer for so long and we may now have it, but it's out of our reach. He's going to a GI soon. They're supposed to call for an appt. after the neurologist finally made the arrangements.

I've read that prednizone can lead to leaky gut, which can lead to celiac disease. He's been on pred. since his transplant. Many docs have thougth the pred. could be attributing to his health issues, but are afraid to take him off of it due to his success with the kidney.

Has anyone else ever been told this? Can the diet do that much harm rather the amazing benefits myself and my kids have seen?

My Dad is such an amazing man. He was a single father to my brother and myself and still dealt with all of these issues. He was everything 2 parents can be in 1. I just want to help him and I feel so helpless. Pelase help if you have any ideas!!!!

[debmidge]

Did the doctors qualify what they meant when they said the gluten-free is dangerous? In what way?

I can't see how it can be dangerous? Are you sure that they are not confused and think what your Dad is eliminating is "carbs"? A low carb diet can be dangerous to kidney health.....maybe there's a bit of confusion somewhere and someone misheard someone? Maybe the doctors heard celiac-no wheat and thought they heard "no carbs"?

[nettiebeads]

Deb is probably right. The gluten-free diet is just a regular diet (plenty of fruits, vegetables, meat, diary as tolerated) but without wheat, oat, barley or rye products. After his visits w/ the drs, why not have him try the diet anyhow for two weeks? It can't do any harm, plenty of us live on it just fine. Keep us posted.

Annette

[Guest nini]

I don't see how on earth it could be dangerous... It is a very very very healthy diet (at least it can be) if you stick to healthy foods that are naturally gluten free... I agree that they could be under the mistaken impression that he would be low carb, but he can eat plenty of carbs if that is the concern. I think I would try to find a nutritionist that is KNOWLEDGEABLE about celiac and the other health issues and customize a gluten free diet plan for him that would include the good carbs that he needs.

Sounds like another case of the medical community not truly knowing anything about celiac or the diet and not willing to even consider it as an option out of what, fear? I don't know...

This diet is NOT dangerous. It is a very healthy diet. I made the mistake of listening to my OB/gyn when I was pregnant with my daughter when he told me that the gluten-free diet was "bad for the baby" and when I went back to eating gluten, I just about died and so did my daughter... Dr.s DO NOT know everything. Question them absolutely. (but be nice about it!) LOL!

[tarnalberry]

I agree - get the doctors to explain why elimintaing only four 'edible' plants from your diet is so dangerous. Ask them if they have found eliminating lotus root and teff from their diet to be dangerous! ;-)

[TCA]

Your responses were all the same as mine. The doctor does know what gluten free means. He says that any major dietary changes could through Dad's system completely out of whack and his health can't handle a lot of ups and downs. I'm like all of you, though. I don't see how it could make that big of a difference. My dad is very on top of his health and follows a diabetic diet already. I was just wondering if any of you had been told this too. I know my own daughter's health was very fragile and we started the diet and she looks like a picture of health now. I don't see how it could hurt Daddy. He was set to go on the diet for a trial before his doctor told him that, but now he's scared to just dabble in it. He's still pursuing it, though, with the GI.

Thanks for your input.

[covsooze]

Just thinking out loud here, but could he make the dietary changes really gradually?

Praying that you find the right solution for him.

Susie x

[ravenwoodglass]

I know so many of you have been through so much to get a diagnosis. I hope you can help me out with your experiences. My father has so many heath issues.

Just to name a few:

Kidney tranplant 22 years ago

9 heart attacks

1 stroke

1 open heart surgery

He also has a lot of possible celiac issues:

undiagnosed (after 7 years of tests) ataxia

undiagnosed SEVERE muscle and joint pain

diabetes

eczema

red face/rosacea

connective tissue disorder - supected to be scleroderma (testing ongoing)

edema

excessive flagulance (sp?)

constipation

SEVERE insomnia (sleeps 10-15 hrs most weeks all his life)

fogginess (also could be attributed to meds)

occasional fevers

constant tissue inflammation

When my kids were diagnosed I started learning about celiac disease and my first thought went to his issues. Since then, I now suspect that I have celiac disease. At my urging he spoke to his family doc about it. He acknowleged that celiac disease could be what started his problems, but said he refused to test him because even if he does have it that the gluten-free diet would throw his body into such a tailspin that it would kill him. His nerologist was set to have him tested, until he spoke to the GP and agreed that he might have a point about the diet being disasterous for him. I'm pulling my hair out because we've been searching and praying for an answer for so long and we may now have it, but it's out of our reach. He's going to a GI soon. They're supposed to call for an appt. after the neurologist finally made the arrangements.

I've read that prednizone can lead to leaky gut, which can lead to celiac disease. He's been on pred. since his transplant. Many docs have thougth the pred. could be attributing to his health issues, but are afraid to take him off of it due to his success with the kidney.

Has anyone else ever been told this? Can the diet do that much harm rather the amazing benefits myself and my kids have seen?

My Dad is such an amazing man. He was a single father to my brother and myself and still dealt with all of these issues. He was everything 2 parents can be in 1. I just want to help him and I feel so helpless. Pelase help if you have any ideas!!!!

I would seek out another opinion or two on this idea that it would hurt him to try the gluten-free diet. I think that is ludacris (sp) especially as so many of his issues are so strongly celiac related. It sounds like he is suffering as badly as I was. I was misdiagnosed for almost 40 years, I didn't show up in blood tests and if the doctors had their way I would still be suffering. I agree strongly with consulting his nutritionist and coming up with a meal plan that accomadates the blood sugar and gluten and run it by these doctors again, then personally I would just do it no matter what they said.

[Ursa Major]

I agree with all of you. How in the world is the gluten free diet going to hurt him, when the gluten is so obviously slowly killing him?

But the suggestion to slowly cut out gluten may be a valid one. Lets say, over the course of a month or so. His doctor couldn't possibly find anything wrong with that, can he? That way it wouldn't be a 'shock' to his body, as it wouldn't be a sudden change.

[jerseyangel]

I agree that the gluten-free diet is not dangerous, and can't think of a way it could hurt. I do understand your reluctance, though, after hearing that from the doctor. This is your dad, after all! I would seek a second opinion.

[debbiewil]

Umm, a gradual change might work. Most of us really aren't completely gluten free the first week or two anyway, while we try to figure out all those labels. Maybe, just using up what he's already got in the house, but checking labels and buying gluten free whenever he has to replace something might allow his system to adapt slowly, but he could aim to be gluten free in a month or six weeks. Suggest that to his doctor and see if he'll go along with it.

Debbie

[chrissy]

i guess doctors go into denial too??? not testing to see if he has celiac, because the diet could be dangerous?? do they think that ignorance is bliss? our ped gi told me that the gluten free diet is a healthy diet and that it is used for other things also, such as irritable bowel.

christine