Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Husband Is Negative Too... Im So Confused

girlfromclare

Recommended Posts

girlfromclare Apprentice
girlfromclare
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

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 Apprentice
girlfromclare
Posted
  • Author
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 Enthusiast
kimber
Posted

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 Contributor
vampella
Posted

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 Contributor
kbtoyssni
Posted

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 Collaborator
happygirl
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


lonewolf Collaborator
lonewolf
Posted

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 Collaborator
Nic
Posted

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 Contributor
Nikki2003
Posted
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 Contributor
IrishKelly
Posted
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 Apprentice
girlfromclare
Posted
  • Author

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 Enthusiast
Nancym
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,037
    • Most Online (within 30 mins)
      7,748
    Ant
    Newest Member
    Ant
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Celiac or Addison's complications? Can someone share their experience?

      By trents · Posted

      Welcome to the forum, @KRipple! Sorry to hear of all your husband's health problems. I can only imagine how anxious this makes you as when our spouse suffers we hurt right along with them. Can you post the results from the Celiac blood testing for us to look at? We would need the names of the tests run, the numeric results and (this is important) the reference ranges for each test used to establish high/low/negative/positive. Different labs use different rating scales so this is why I ask for this. There aren't industry standards. Has your husband seen any improvement from eliminating gluten from his diet? If your husband had any positive results from his celiac blood antibody testing, this is likely what triggered the consult with a  GI doc for an endoscopy. During the endoscopy, the GI doc will likely biopsy the lining of the small bowel lining to check for the damage caused by celiac disease. This would be for confirmation of the results of the blood tests and is considered the gold standard of celiac disease diagnosis. But here is some difficult information I have for you. If your husband has been gluten free already for months leading up to the endoscopy/biopsy, it will likely invalidate the biopsy and result in a false negative. Starting the gluten free diet now will allow the lining of the small bowel to begin healing and if enough healing takes place before the biopsy happens, there will be no damage to see. How far out is the endoscopy scheduled for? There still may be time for your husband to go back on gluten, what we call a "gluten challenge" to ensure valid test results.
    • kate g
      Are they close to a drug that will help celiacs with cross contamination

      By kate g · Posted

      Ive read articles that there is stage 2 research being conducted for drugs that will limit damage to celiacs through cross contamination- how close are they to this will there be enough funding to create a mainstream drug? 
    • KRipple
      Celiac or Addison's complications? Can someone share their experience?

      By KRipple · Posted

      Hello, My husband has had issues with really bad diarreah for over nine months now. In mid November, he went to the doctor for what they thought was a bad cold, which two weeks later was diagnosed as bronchitis. A week later, in December, I had to take him back to urgent care and from there, to the emergency room cause his vitals were too low. They said he was having an Addisionan crisis and he spent five days in the ICU. Since my husband has Autoimmune Polyendocrine Syndrome Type II (type 1 diabetes, Addison's and Hashimoto's), I fought for a blood test to determine if he had Celiacs. Given the results of the test, he was told to go to a gastro for an endoscopy. It took two months to get his first appointment with the gastro. Still waiting for the endoscopy appointment. He stopped eating gluten in the hospital and has followed a gluten-free diet since. His diarreah continues to be as bad as before he stopped eating gluten. Still has a horrible cough that makes him hack. His energy is so depleted he pretty much goes to work, comes home and goes lie in bed. He is having issues regulating body temperature. He is barely eating (he's lost 20 pounds since mid-December). Body aches. Totally run down. He has been taking more prednisone lately to try to counter the symptoms.  Today, we went to his endo to discuss these things. She said to continue taking increased amount of prednisone (even though I explained that the increased dosage is only allowing him to do the bare minimum). According to the endo, this is all related to Celiacs. I am concerned because I know that both Celiacs and Addison's can have similar symptoms, but don't know if he would still be having these many symptoms (worsening, at that) related to the Celiac's after stopping gluten two months ago. If anyone in this group has a combination of Celiacs and Addison's, could you please share your experience? I am really concerned and am feeling frustrated. His primary care provider and endocrinologist don't seem to consider this serious enough to warrant prompt attention, and we'll see about the gastro.  Thanks.
    • cristiana
      Celiac pain relief

      By cristiana · Posted

      Hi @Karmmacalling I'm very sorry to hear you are feeling so unwell.  Can you tell us exactly what sort of pain you are experiencing and where the pain is?  Is it your lower abdomen, upper abdomen etc?  Do you have any other symptoms? Cristiana
    • trents
      How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?

      By trents · Posted

      The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a strict gluten-free diet, the symptoms do not remit. These cases may be refractory celiac disease or due to gluten contamination; however, the lack of response could be related to other dietary ingredients, such as maize, which is one of the most common alternatives to wheat used in the gluten-free diet. In some celiac disease patients, as a rare event, peptides from maize prolamins could induce a celiac-like immune response by similar or alternative pathogenic mechanisms to those used by wheat gluten peptides. This is supported by several shared features between wheat and maize prolamins and by some experimental results. Given that gluten peptides induce an immune response of the intestinal mucosa both in vivo and in vitro, peptides from maize prolamins could also be tested to determine whether they also induce a cellular immune response. Hypothetically, maize prolamins could be harmful for a very limited subgroup of celiac disease patients, especially those that are non-responsive, and if it is confirmed, they should follow, in addition to a gluten-free, a maize-free diet." Notice that those for whom it is suggested to follow a maize-free diet are a "very limited subgroup of celiac disease patients". Please don't try to make your own experience normative for the entire celiac community.  Notice also that the last part of the concluding sentence in the paragraph does not equate a gluten-free diet with a maize-free diet, it actually puts them in juxtaposition to one another. In other words, they are different but for a "limited subgroup of celiac disease patients" they produce the same or a similar reaction. You refer to celiac reactions to cereal grain prolamins as "allergic" reactions and "food sensitivity". For instance, you say, "NIH sees all these grains as in opposition to celiacs, of which I am one and that is science, not any MD with a good memory who overprescribes medications that contain known food allergens in them, of which they have zero knowledge if the patient is in fact allergic to or not, since they failed to do simple 'food sensitivity' testing" and "IF a person wants to get well, they should be the one to determine what grains they are allergic to and what grains they want to leave out, not you. I need to remind you that celiac disease is not an allergy, it is an autoimmune disorder. Neither allergy testing nor food sensitivity testing can be used to diagnose celiac disease. Allergy testing and food sensitivity testing cannot detect the antibodies produced by celiac disease in reaction to gluten ingestion.  You say of me, "You must be one of those who are only gluten intolerant . . ." Gluten intolerance is synonymous with celiac disease. You must be referring to gluten sensitivity or NCGS (Non Celiac Gluten Sensitivity). Actually, I have been officially diagnosed with celiac disease both by blood antibody testing and by endoscopy/positive biopsy. Reacting to all cereal grain prolamins does not define celiac disease. If you are intent on teaching the truth, please get it straight first.
×
×
  • Create New...