Husband Is Negative Too... Im So Confused

[girlfromclare]

Hubbie came back with negative blood results today. I didnt know whether to laugh or cry! So I cried.

Our son was also negative a few days ago and I was depending on hubbies results being positive to confirm hereditary celiac disease. Now we are left no clearer as to what to do. Anyway, we have started the diet. The bread is horrendous! So we are striving to make our own and it isnt too bad. Now that they are both negative though, neither are too keen on the diet. I dont blame them... but I am still inclined to think it would help. So they have agreed to stick to it for a couple of months perhaps. If there is no clear improvement in either of them, then I guess thats that!

I feel so disillusioned. I was so sure that they were both going to be testing extremely positively for celiac disease.

They are both clear candidates. I know that there are plenty of people in this group who have gone on positive dietry response alone, and I am perfectly happy to do that. but its hard to explain to other people namely family... you know the score!! Also, a few members of husbands family have similar symptoms and more... I was hoping that a positive diagnosis would convince them to get tested themselves! Oh Well.

Sorry for ranting. Im so disappointed.

Fingers crossed for improvements on the diet anyway!! I will stick to the diet if it works, no matter what anyone says.. but it would have been nice to have the medical confirmation! WHy do we all feel we need that???

Best of luck to everyone on the board.

Kind regards

Liz.

[Guest nini]

the blood tests can be false negative... it's possible if they were to have a biopsy (WHILE STILL CONSUMING GLUTEN) that they MIGHT pop positive on that... however, even that can be hit or miss, so trying the diet is your best bet...

Have you tried EnerG's Light Tapioca Loaf bread yet???? If you've tried anything else I can understand their dissappointment, but my daughter and I recently discovered this bread and we love it! With just a little warming in the microwave to soften it up (about 20 second or more) I've successfully made all kinds of sandwiches with it now and am in love with this bread. It's the closest thing to a WHITE BREAD flavor and texture that we have found. Now, it doesn't taste THAT great right out of the package, you do have to warm it in the microwave (as with most gluten-free breads) in order for it to be palatable, but once you warm it you can make sandwiches with it and put them in sandwich baggies for lunches or eat them right away.

[girlfromclare]

the blood tests can be false negative... it's possible if they were to have a biopsy (WHILE STILL CONSUMING GLUTEN) that they MIGHT pop positive on that... however, even that can be hit or miss, so trying the diet is your best bet...

Have you tried EnerG's Light Tapioca Loaf bread yet???? If you've tried anything else I can understand their dissappointment, but my daughter and I recently discovered this bread and we love it! With just a little warming in the microwave to soften it up (about 20 second or more) I've successfully made all kinds of sandwiches with it now and am in love with this bread. It's the closest thing to a WHITE BREAD flavor and texture that we have found. Now, it doesn't taste THAT great right out of the package, you do have to warm it in the microwave (as with most gluten-free breads) in order for it to be palatable, but once you warm it you can make sandwiches with it and put them in sandwich baggies for lunches or eat them right away.

HI nini... thanks so much for that. You know I didnt know about putting it in the microwave. All the breads have tasted so dry and crumbly... really horrible. .. like old dried up madiera cake - but without the sweet taste. You can imagine my four year olds disappointment to find this in his lunch box at school! I baked some bread today that hasnt turned out too bad and if it gets dry overnight Ill pop it in microwave tomorrow. I just hope I can keep up the baking... its tough to fit everything in isnt it?

Im kind of thinking getting the celiac home testing kit... cheap price and only takes 10 minutes.... dont think it will be any more sensitive than what they doc would do though so probably get another negative there!

Anyway, all the best and thanks again.

Liz

[kimber]

I haven't even had dd/ds tested

We have a family history and their reaction to the gluten-free diet was enough for me

I can understand your wanting confirmation though

Good Luck

gluten-free bread is tough...my ds loves enjoy life white rice...I toast it and put on a little jelly

Kim

HI nini... thanks so much for that. You know I didnt know about putting it in the microwave. All the breads have tasted so dry and crumbly... really horrible. .. like old dried up madiera cake - but without the sweet taste. You can imagine my four year olds disappointment to find this in his lunch box at school! I baked some bread today that hasnt turned out too bad and if it gets dry overnight Ill pop it in microwave tomorrow. I just hope I can keep up the baking... its tough to fit everything in isnt it?

Im kind of thinking getting the celiac home testing kit... cheap price and only takes 10 minutes.... dont think it will be any more sensitive than what they doc would do though so probably get another negative there!

Anyway, all the best and thanks again.

Liz

[vampella]

Bread is interesting that's for sure!!! I have a 3.5 yr old Emmah who was diagnosed through diet. When I told the teachers they said ok and a week later they asked how she was Dx'ed....I just said blood work. They really do not need to know. Aside from other celiac's, just regular people I say bloodwork. it's really not ther business, is it?

I've tried a ton of breads. I've tried hommade and store bought, I've only been doing this a month so I haven't mastered the bread baking. the bread that Emmah seems to like the best I get at safeway. kinikinick (SP?) tapioca bread.

I have a check up today to see how Emmah's doing and I spoke to her doc on the phone last week. He doesn't know why she had 2 FALSE Neg tests. I did tell him I wanted an IgA test run to see if that was low because that can cause FALSE NEGS. Which I didn't know at the time. Here my doc only ran the TTG and that was it, it's all they are supposed to do here now. So today we are doing more blood work. That IgA will be run and I don't hope it's low but it would explain why it was meg. REMEMBER though..like my DR told us, NO test is 100%.

Good luck with the diet.

Like Liz said though put it in the micro. I also have to watch the thickness of the crust because some the crust is thicker and hard and Emmah's not a fan of that.

It's all trial and error. There are some great recipe books for bread also.

The Gluten-Free Gourmet Bakes Bread: More Than 200 Wheat-Free Recipes

by:

Hagman, Bette

Green, Peter H. R.

Char

[kbtoyssni]

There are a lot of bad gluten-free foods out there, but there are also a lot of good ones. I've had some really horrible bread, but now I eat Food For Life brand (my favorite are the black rice, red rice and millet). If you can try a different brand, I'd do that.

As for the negative test results, false negatives are not all the uncommon. If you would like a medical diagnosis, you could try gene testing through enterolab.

[happygirl]

If you live near a whole foods, try their pizza crusts. I just moved to a larger area where there are WF and I am in absolute heaven. I have made pizzas and breadsticks...my non-gluten free parents even ate it and LOVED it. I highly recommend it if you are near one.

I have made the bob's red mill bread and enjoyed it. I also like some of the knnickinick (sp?) products.

but, by far, my most favorite is the whole foods pizza crust.

[lonewolf]

All four of my kids tested negative, but the doctor and I agreed that one son should try gluten-free anyway. He has had great results. My oldest daughter decided on her own that going gluten-free made her feel better (she was 14, a bit older than your little guy) and is happily gluten-free without a diagnosis. The other two really don't show any symptoms, so they are allowed to eat gluten outside the house.

There are two threads going in the Coping with Celiac section that deal with this kind of thing. One is called something like "Not Truly Celiac" and the other "Do any Celiacs get offended..." You might find some helpful information there.

As for bread, either homemade, if you have a good recipe, Gluten Free Pantry Country French mix or Ener-G Light Tapioca are the best that I've found.

[Nic]

I read an article on line where they were talking about testing methods for Celiac. They were quoting Dr. Fine and they said that the blood work is only about 60% accurate when it comes up negative. Could that really be? So for all of our kids who test negative there is still a 40% chance they really have it. That is a big percentage. Please correct me if anyone else read that article and I misread it.

Nicole

[Nikki2003]

Hubbie came back with negative blood results today. I didnt know whether to laugh or cry! So I cried.

Our son was also negative a few days ago and I was depending on hubbies results being positive to confirm hereditary celiac disease. Now we are left no clearer as to what to do. Anyway, we have started the diet. The bread is horrendous! So we are striving to make our own and it isnt too bad. Now that they are both negative though, neither are too keen on the diet. I dont blame them... but I am still inclined to think it would help. So they have agreed to stick to it for a couple of months perhaps. If there is no clear improvement in either of them, then I guess thats that!

I feel so disillusioned. I was so sure that they were both going to be testing extremely positively for celiac disease.

They are both clear candidates. I know that there are plenty of people in this group who have gone on positive dietry response alone, and I am perfectly happy to do that. but its hard to explain to other people namely family... you know the score!! Also, a few members of husbands family have similar symptoms and more... I was hoping that a positive diagnosis would convince them to get tested themselves! Oh Well.

Sorry for ranting. Im so disappointed.

Fingers crossed for improvements on the diet anyway!! I will stick to the diet if it works, no matter what anyone says.. but it would have been nice to have the medical confirmation! WHy do we all feel we need that???

Best of luck to everyone on the board.

Kind regards

Liz.

Me and my husbands blood work came back neg and both are daughters have it.

Celina

[IrishKelly]

Hubbie came back with negative blood results today. I didnt know whether to laugh or cry! So I cried.

Our son was also negative a few days ago and I was depending on hubbies results being positive to confirm hereditary celiac disease. Now we are left no clearer as to what to do. Anyway, we have started the diet. The bread is horrendous! So we are striving to make our own and it isnt too bad. Now that they are both negative though, neither are too keen on the diet. I dont blame them... but I am still inclined to think it would help. So they have agreed to stick to it for a couple of months perhaps. If there is no clear improvement in either of them, then I guess thats that!

I feel so disillusioned. I was so sure that they were both going to be testing extremely positively for celiac disease.

They are both clear candidates. I know that there are plenty of people in this group who have gone on positive dietry response alone, and I am perfectly happy to do that. but its hard to explain to other people namely family... you know the score!! Also, a few members of husbands family have similar symptoms and more... I was hoping that a positive diagnosis would convince them to get tested themselves! Oh Well.

Sorry for ranting. Im so disappointed.

Fingers crossed for improvements on the diet anyway!! I will stick to the diet if it works, no matter what anyone says.. but it would have been nice to have the medical confirmation! WHy do we all feel we need that???

Best of luck to everyone on the board.

Kind regards

Liz.

My whole family came back negative (myself, my father, and my niece included), however, the diet is the only thing that did prove all the dr.'s wrong, sorry to hear that your family members seem to feel that dr.'s know everything...after they've been somewhat sick for long enough they may come to a different realization

[girlfromclare]

thanks so much everyone for your replies. Esp all the bread info! I have been checking it all out. Because we live in rural Ireland, our only heatlh food shop is forty minutes away and doesnt have a great deal of selection. There is a chain store about an hour away (tescos) who have a reasonably good range but its mostly own brand stuff. I didnt see any of the names you guys mentioned. But I am baking away anyway for the time being. Its not too bad. If the results are good then it speaks for itself really doesnt it? Actually, can anyone tell me what they substitute for sausages? I noticed that all the shops Ive checked out only have regular sausages. Even the meat substitutes sausages have wheat flour in them... My boy and hubbie love their sausages! Bangers and mash is a big favourite in our house..

Thanks again for all your help and advice. This is a fantastic place to come!!

Love Liz

x x

[Nancym]

The blood test is very flawed. It doesn't catch celiac when someone has the skin manifestation or the brain manifestations, generally. If you all feel like you need the paper to confirm it, try getting tested by Enterolab.