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

Does The Spouse Really Understand


Mally-bug

Recommended Posts

minton Contributor

I was in the same boat...when I first met my fiance, he tried to give me a hot dog on gluten bun. He thought at first I was beinga stuck up prick and a health food nut. I had to explain it and show him this site, but he got it. His mom already understood a little. She said they both (she and her son, my fiance) had fibromyalgia and their doctor had suggested celiac may be the cause but they never tried a gluten free diet. They did however, start eating non- genetically modified foods. (It has been shown that most wheat is GM to raise protein-gluten-levels by 50 times the original amount). His symptoms of fibromyalgia became almost non existant, hers lessened quite a bit. With the economy they cant afford such organic products and with the addition of GM foods, both have symptoms returning. He doesn't quite get it but she is a health food nut and she's amazing. I have started educating him slowly. Normally if he offers me a gluten food, we read the ingredients together and I show him what ingredient is unsafe. He has started reading labels himself and now he will ask me about ingredients if he's unsure.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



April in KC Apprentice

Yes, I can tell within half an hour, especially during my first year gluten free. I am a little less sensitive now that I've been gluten-free for much longer.

Sounds like he doesn't get it or quite believe that it can be a significant problem. Perhaps take him to an "official" website like the National Institutes of Health (a government website).

Keep a positive attitude - proactively scout out some new places where you will feel comfortable eating and take HIM there before he has the chance to suggest another gluten palace. If you have a good relationship, remind him that he promised in sickness and in health, and that eating a certain way makes you feel more healthy, more energetic, more up to life. There are probably some benefits for him when you feel good - make sure he is able to connect the dots. :)

Link to comment
Share on other sites
efb416 Newbie

Thank you for sharing your wonderful story. My fiance has been trying to do the same thing when we're together since my diagnosis this past summer, although my family tries to convince him not to (I almost did too). But it is difficult to do on your own, and hearing from so many more people the support or lack of, from their families and loved ones hits the spot. I too was in a similar situation to your "Amy", however, it took much longer here in Canada to get the testing done. I hope that what we take from this is the sensitivity to deal with all situations thrown at us, and toward others in different medical situations, because until you walk a mile in their shoes, you really don't get it. And I know because I was one of those who never quite understood when people said they couldn't do something... because of ailing health, etc... I understood allergies, but this is more challenging to grasp. So thanks again for sharing your story, I am going to share it with my fiance when he comes by tonight, and thank him again, for all the support, because there's no way I could do this alone! To all the posts above, I suppose we must learn to appreciate all the support however much or little we recieve and remember it. Because it is so easy to remember the bad, especially when there is so much of it! I know my in-laws don't really get it, and I still bring food with me when I am well enough to go out, my family tries (usually with me watching over their shoulder) to make me something safe to eat, but patience, time and education will eventually set in.. I hope.

Thanks again for your little ray of light in the dark....

I read your posting and signed up - just so i could respond to it, because I understand your situation and sympathize.

Your problem is a common one as many celiac sufferers are quick to discover. It's incredibly hard for friends and family to understand what you're really going through when the most dramatic symptoms of this condition are internal.

I'm not a celiac, or a spouse. Yet. I'm a fiancee of a recently diagnosed celiac whose cousin is also a celiac. When my cousin was diagnosed, I really didn't understand how difficult his challenge was going to be. I suppose because he lives so far away - i didn't get to see how completely this would affect him. But when my Amy was diagnosed it hit a little closer to home - there were no question in my mind what i needed to do - i needed to go gluten free for her, because she admitted to the ER with such acute symptoms, I was seriously afraid I would be widowed before I was even married. And for me - there can be no other than my Amy. I waited a lifetime to marry her, and i'd do it again in a heart beat.

We suspected she might be a celiac and took her in to get tested even before things got really dire. She was admitted to the ER two days later, vomiting blood and with a belly so distended, she looked like she was 6 months pregnant. A day later - she was REadmitted. Vomiting blood and still in such awful pain. I was terrified. suddenly i was facing the reality of losing the only person in this whole world who brings any meaning to me, and i decided right there and then - my first priority is to help her regain her health, and to keep her healthy.

Non celiacs don't understand that even if you look perfectly healthy - ANY amount of gluten in your system is damaging your intestine - even if you don't show any outward signs. Non celiacs have a very hard time understanding that you risk more than just a belly ache when you injest less than a crumb of gluten - you risk the ability to digest dairy, you risk the ability to gain any nutrients from even a gluten free meal, you risk your ability to reproduce, and if you continue to eat gluten - you can develop intestinal cancer.

What's worse though in my opinion is the day to day challenge of living with this disease and the impact this disease has on your emotional health. No one understands loss like a celiac does. And until they get that everytime you see a bagel - it hurts - until he gets that watching someone else have a dinner roll in front of you - you mourn - until someone takes a walk in your shoes - he or they may never understand. I gave up cheetos, pizza, hamburgers, hot dogs, cereal, breads, pasta, fast food - you know what i'm talking about. And you can't cheat on the diet - it's not a fad or a passing thing - this is who you are - and no one misses who you were more than you. Alas - until someone walks a mile in your shoes - be prepared for all kinds of insensitivities.

I'm not saying he has to go gluten free too - that's a personal choice but until he understands the kind of loss you're living with - you're in for a very long, lonely battle. And if he really understood it - he wouldn't take you to places where temptation is all around you. I'd never dream of stepping foot into panera bread with Amy - even if i still ate gluten. When Amy and I dine - I make sure they take that damn bread basket away. I make sure she has clean silverware, and we STRESS to the waiter that we want the GLUTEN FREE pasta. etc. We're incredibly blessed, our family gets it - and wheat isn't served at family meals anymore. Every meal is Amyfriendly, as i like to put it.

I don't know what to tell you as to how to convince your husband and family that your health concerns are serious and need to be treated thusly. But maybe this posting will help. Because I nearly lost the only person I care about because of this disease - so I chose to go gluten free for her.

It's a challenge, it's a pain, but by going gluten free for her - at least i understand her loss, and we're united in this, as we are everything else. I hope your family starts to stand behind you, and your man begins to understand what "in sickness and in health" means. But i do know that this isn't a disease many can handle alone. it leads to isolation very quickly. Surround yourself with people who DO understand. Allow them to help you. Make them your support group, but whatever you do - do not eat gluten - even if your family serves it to you. Any gluten will damage your intestine, no matter how small the portion. And if they don't understand your dietary needs - then you have to doubly careful. your health has to come first.

The only other thing I can say is buy them the book "against the grain" by Jax peters Lowell and have them read it. GUILT them into reading it if you have to. helped me really grasp what Amy was going through and maybe they will take your feelings into consideration the next time they think about eating a white bread sandwich in front of you or a subway sub. I know I miss subway, but I'd miss my Amy so much more.

Best of luck, and my heart goes out to you.

G

Link to comment
Share on other sites
tmb Newbie

I think the issues that celiacs experince from family and friends around a basic 'just do not get it', is actually multifaceted and we end up getting short-changed at every turn.

It is a complex condition and not as visible as many other - heart attacck, stroke etc that appear to have binary characteristics, and more importantly can happen to others (not just weird celiacs). Even those that have it often understand very little around the disease and getting your head around the diet takes a long time even for the sufferer.

I think our parents react in very definite ways. Aside from the above hypochondriac type perspective, our parents have fed us for most of our lives. We are now effectively saying that this food might have been slowly killing us. Parents are responsible for ensuring many things for their children, and food is a very directly controlled part of this. (exercise, schooling etc are but there is a greater element of the child having some responsibility in this achieving good school results - whereas when parents lay food on the table, kids take it on trust). I think many parents are unable to accept that their children are unwell from eating the good wholesome, wholegrain breads that their parents made sure they ate, and now suffer for this. It is easier for parents to imagine the whole thing is faddish and psychosomatic, that way they carry no responsibility. This issue can also affect a spouse, especially a wife. Here again, there is pride in producing healthy meals for the family, and husband, now you face that it has been slow poisoning instead.

I am offering this perspective from my own experience and others, not because it directly resolves the issues of close family members attitudes toward celiac disease and diet logistics, but because it gives an idea of where some people are coming from and why they might not easily accept things that seem obvious to a celiac.

My approach is be blunt. I do not think it useful to be dramatic, however if a celiac does not eat correctly they will die younger and have a poorer quality of life - thats the bottom line and I have spelled this out to my family in no uncertain terms. I challenge their competence to make medical judgements when they question or doubt aspects of the condition. Once again, its not difficult to judge if a person has the training or direct experience to make valid comments on something we have lived with and learned the hard way. Often discussions about celiac disease (many other things too) center around the specifics and why it is (or is not) a certain way. I go straight to the person and establish if they are able to hold a competent opinion on the subject. If not, I have no issue educating them, as long as they respect my role as a teacher and understand that relative to them, I am the expert.

Perhaps this seems unnecessarily harsh and confrontational with direct family and friends, yet if done with passion some people need a quite a shake-up to get over some of the obstacles that prevents their grasping the gravity of the illness. I genuinely believe my wife was unable to project the long term issues for celiac disease, so I spelled them out - help me now or face a future with a sick husband/father prematurely dying - this took some uncomfortable sessions, but they took us a long way to a workable solution. My kids might also have celiac disease, so the same long term prognosis needs to be made clear so we do not face the guilt when they become sick adults.

My in laws and parents are more fixed in their views, but have also come to accept more. Few people will ever see it through the eyes of a sufferer, unless they are one themselves, so I dont expect too much, but tiptoeing around the issues does not seem to work.

I could scream sometimes when someone tells me that 'just a bit of chicken stock' surely could not hurt! Its a good time to ask how they think they might know something like this, and also check back in a few days to report that indeed my body did react, but it was useful challenge test for my tolerance levels! Next time please trust my judgement when it comes to what does or does not affect me.

As an aside, although my friends are as ignorant as my family on celiac disease, they are usually far less resistant to being enlightened, and usually take my comments at face value. I spent far too long taking the hard way out, and eating suspect foods because it was easier than making a song and dance. Now I am quite firm about checking with restuarants and hosts and feel very little if I either bring my own food or insult the host by not eating part of their meal - my ill health is not the best option for me. People seem to want to get me to fit in, or feel sorry for me that my food has no flavour and just wish I would add some tasty glutens. Once again, I tell them to trust my judgement, not theirs.

Wow that was a good moan session. I feel a lot better, nothing like a gluten-free soapbox.

Link to comment
Share on other sites
dollamasgetceliac? Explorer

NO

no one understands...

...but the llamas do

:P

Link to comment
Share on other sites
Welda Johnson Newbie

Hi,

I had to chuckle when I got to the part where you said, "I'm preaching to the choir." Amen! We have probably all faced this situation with family members time and time again. Finally, I've come to the notion that it is easier for me to change, than to count on all my family members changing, though I hold out HOPE that one day we'll all be HEALTHY and happy. Here's how I have handled this dilemma. I've explored my boundaries to find out just how gluten really affects me, even going to the point of working in a bakery and an ice cream parlor (I'm intolerant of all grains, all milk & dairy, egg whites, yeast, casein and whey) and seeing what happens when I smell or handle foods that I cannot ingest. Working in both places worked out fine, and I spend my time focusing on reading labels diligently, as well as eating only in restaurants I'm sure are safe for me.

I've found that this is my disease, my challenge to face, and my opportunity to learn as much as I can about nutrition in general and how foods affect me in particular. I'm ecstatically happy to see how well I feel when I stick to the diet that I know works for me, and I hope that others visiting this site will find that same happiness.

There is a certain happiness in learning that I can overcome these challenges that gluten intolerance has presented, and that I can even help others, including family members and friends, find out if they have food intolerances that are wreaking havoc with their lives. I wish you the best as you travel on this path of happiness and health. Welda

Link to comment
Share on other sites
Tallforagirl Rookie
Well, I have been TRYING to eat gluten-free since July. My daughter had a positive result from Enterolab and she and I both had positive dietary responses. Another daughter got on the bandwagon after seeing our success and she is doing great (eliminating casein too) Now, my son (who lives on his own) is trying this as his fiance is positive he has this as well ---I do too! Now, for hubby......

Here is my problem: we are now empty nesters (at least during college months) and he likes pizza, pasta, chinese food, ice cream cones, etc. He wants to support me, BUT he likes to try new places like a restaurant called "noodles"...does that even sound like a place a gluten-free person should enter????? It's hard walking into Panera, Einstein, etc. I know I am preaching to the choir here. You all know the story. How can I get him and my other extended family to see that this is real for me and not just another trendy fad thing I am doing for a short while before I slip up again?

I have been glutened a few times and he is amazed at the speed at which this affects me. I can tell with 20 -30 min if I have ingested something wrong. You can too, right? My extended family thinks I'm crazy (mine and in-laws) and anything in moderation is fine and so "having a little" is ok. Like my very well intentioned sister who dumped all the spaghetti sauce onto the wheat pasta before "we" got our chance to put a little on our rice pasta..... See what I mean? So what do you do?

My husband is a great guy, but I just don't think he really gets it. Anyone else in this situation? I'll look for your advice.

Thanks~ :(

Have you had a blood test and/or biopsy? Has your daughter been confirmed via biopsy?

You should really get a definitive diagnosis. I just finished reading Dr Peter Green's excellent book "Celiac Disease - a Hidden Epidemic," and he really stresses the importance of a full and proper diagnosis, as do all other professional sources of Celiac information I have ever read. Blood tests are not 100 per cent definitive for diagnosis, and importantly, you need to be sure that you or your daughter don't have anything else going on that may need treatment. There are other conditions than Celiac which can respond positively to a gluten-free diet, so a positive response to diet change alone is not definitive for diagnosis.

It's also possible that your husband would understand better if you had a proper medical diagnosis.

If I'm wrong and you have had all the tests then good luck to you, but for others reading this thread, I think it needs saying anyway.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



JNBunnie1 Community Regular
Have you had a blood test and/or biopsy? Has your daughter been confirmed via biopsy?

You should really get a definitive diagnosis. I just finished reading Dr Peter Green's excellent book "Celiac Disease - a Hidden Epidemic," and he really stresses the importance of a full and proper diagnosis, as do all other professional sources of Celiac information I have ever read. Blood tests are not 100 per cent definitive for diagnosis, and importantly, you need to be sure that you or your daughter don't have anything else going on that may need treatment. There are other conditions than Celiac which can respond positively to a gluten-free diet, so a positive response to diet change alone is not definitive for diagnosis.

It's also possible that your husband would understand better if you had a proper medical diagnosis.

If I'm wrong and you have had all the tests then good luck to you, but for others reading this thread, I think it needs saying anyway.

Are there any medical articles or info you could link me to that says a positive blood test doesn't count as a definitive diagnosis? I'm interested in reading more about this, as I went gluten free on my own and never pursued testing. I got the rash, so there's no question about it where I'm concerned, but I am curious.

Link to comment
Share on other sites
Tallforagirl Rookie
Are there any medical articles or info you could link me to that says a positive blood test doesn't count as a definitive diagnosis? I'm interested in reading more about this, as I went gluten free on my own and never pursued testing. I got the rash, so there's no question about it where I'm concerned, but I am curious.

Try this: Open Original Shared Link

The Celiac Centre at Columbia is one of the world's most respected, and it's the one that Dr Green is attached to. But you will find the same info in relation to need for biopsy prior to diagnosis, on any medical/professional website relating to celiac disease.

In Dr Green's book, he says that if you think you have DH, you can have the rash biopsied (a skin biopsy) for quite some time after going gluten-free and if it is DH it will still show a positive result. If you have been diagnosed with DH you definitely have celiac disease.

I can understand that if you've been on a gluten-free diet for a long while, and feel a lot better, you don't want to go back to eating gluten in order to get the blood tests and/or biopsy, but that's why I think it's important to state the importance of proper diagnosis, for those reading this forum who might not have completed testing.

Link to comment
Share on other sites
  • 2 weeks later...
JNBunnie1 Community Regular
Try this: Open Original Shared Link

The Celiac Centre at Columbia is one of the world's most respected, and it's the one that Dr Green is attached to. But you will find the same info in relation to need for biopsy prior to diagnosis, on any medical/professional website relating to celiac disease.

In Dr Green's book, he says that if you think you have DH, you can have the rash biopsied (a skin biopsy) for quite some time after going gluten-free and if it is DH it will still show a positive result. If you have been diagnosed with DH you definitely have celiac disease.

I can understand that if you've been on a gluten-free diet for a long while, and feel a lot better, you don't want to go back to eating gluten in order to get the blood tests and/or biopsy, but that's why I think it's important to state the importance of proper diagnosis, for those reading this forum who might not have completed testing.

So basically blood tests can indicate big huge problems with gluten, but not actually diagnose Celiac disease versus intolerance?

My other question: What about an actual diagnosis is helpful to people? Is there some protocol everyone's been following, beyond being gluten-free, that I don't know about?

Link to comment
Share on other sites
Gemini Experienced
So basically blood tests can indicate big huge problems with gluten, but not actually diagnose Celiac disease versus intolerance?

My other question: What about an actual diagnosis is helpful to people? Is there some protocol everyone's been following, beyond being gluten-free, that I don't know about?

Blood tests CAN and DO definitively diagnose Celiac Disease but as you know, it all depends on what stage of the game you are in or whether or not you have celiac disease vs. GS. The medical profession have not developed tests for GS yet because there are just too many doctors who refuse to believe the condition is real. I should clarify that the doctors in question are those who steadfastly stick to all AMA ideals.

The EMA test is 100% specific to Celiac Disease, meaning no other disease will cause a positive result. This does not help those who test negative on blood work, for whatever reason that may be and there are many. My doctor diagnosed me via blood work, after I failed all tests by HUGE numbers. I was also losing 1 pound per day at that point and was a poster child for classic Celiac Disease. She stated that if I wanted a biopsy, I could have one but she diagnosed me on blood work and symptoms PLUS my dietary response, which was huge. She even went so far as to state that if any doctor couldn't figure it out on my blood work and presentation alone, they ought to surrender their license. After going more than 20 years of mis-diagnosis and becoming life threatening ill, I declined a biopsy and never looked back. There is no question whatsoever I have full blown Celiac. If I had a dime for every person who has told me how different and healthy I look and wanted to know what I have done, I'd be rich. :o

I have read Dr. Green's book and thought it excellent. This was the one area I did not agree with him on.....always having to do a biopsy for the "definitive" diagnosis. I think the only people that satisfies are the medical profession for liability reasons and yes, the money to be made from doing endoscopies. I am not saying Dr. Green does that but many doctors do. I would never trust a doctor who relied solely on a biopsy for diagnosis and ignored a patient's symptoms and misery. This is exactly why it takes years for people to get diagnosed and speaking for myself, I am not happy about the 3 other auto immune diseases I have as

a result of their mistakes.

As for the gluten-free diet helping other medical conditions that may not be Celiac Disease, I can't think of any other disease related to the gut or autoimmune system that uses the gluten-free diet as a treatment. I know people who have Crohn's Disease to the point where they have had multiple surgeries and they are not following the gluten-free diet, nor has it been offered as a treatment. I do think it best to have some testing done but if a doctor is pushing a biopsy really hard and not relying on blood work or dietary response as part of the overall picture, find another doctor. I personally think those that have had a positive biopsy are the lucky ones because there are so many others that had it done and were told it was negative so go ahead and keep gluten in your diet.....you're fine. Turns out they were probably in the early stages and the damage was not bad enough to find, at that point. How do you face a patient after that when down the road they become seriously ill and it IS Celiac Disease and they should have avoided gluten years ago? My firm belief is that the medical profession has got to redefine the diagnosis process to avoid this scenario but it will be difficult because, bottom line, medicine is a business and Celiac Disease requires no drugs or treatment....just a dietary change.

Read Dr. Green's book...it's full of excellent information other than the problem I have with him over how to diagnose.

Link to comment
Share on other sites
home-based-mom Contributor
So basically blood tests can indicate big huge problems with gluten, but not actually diagnose Celiac disease versus intolerance?

My other question: What about an actual diagnosis is helpful to people? Is there some protocol everyone's been following, beyond being gluten-free, that I don't know about?

I don't think there is any protocol beyond diet. Some people just need that piece of paper to enforce their inner discipline. Parents may need it to be able to set up a 504 plan for modifications in the classroom. College students may need it in order to be exempt from a requirement to live in a dorm with a mandatory food plan. Employees may need it for FMLA documentation. It might come in handy if you need to be hospitalized because at least you could back up your dietary demands with paperwork. And it could circumvent the need to reinvent the wheel if you move or have to change doctors.

I personally don't have an official diagnosis. I figured out what caused my problems and stopped eating gluten. By the time I realized that I needed to be eating it for the test to be accurate, it was too late. It would be nice to have one, not nice enough to make myself sick for months just to get it!

Link to comment
Share on other sites
mushroom Proficient
As for the gluten-free diet helping other medical conditions that may not be Celiac Disease, I can't think of any other disease related to the gut or autoimmune system that uses the gluten-free diet as a treatment.

Well, there is one I know of that recommends a gluten-free diet, and that is ankylosing spondylitis, one of the rheumatoid auto-immune diseases. In fact, that is why I gave up gluten. I figured that if it could help with AS in might also help me with my RA. At that time I didn't even know there was either a blood test or an endoscopic test that could diagnose celiac. It was simply because our house builder had AS and refused to touch gluten. I thought he was going to puke when I offered him scones the first day on the job.

Link to comment
Share on other sites
sbj Rookie
My other question: What about an actual diagnosis is helpful to people? Is there some protocol everyone's been following, beyond being gluten-free, that I don't know about?

When you are first diagnosed celiac you should undergo a complete blood count, check all your vitamin and mineral levels, you should get a bone density test, and you should discuss with your doctor any symptoms you have that might be associated with some of the auto-immune disorders that celiac sufferers also tend to get. The bone density test, in particular, seems to be one that many self-diagnosed are skipping. (And, of course, after being 'diagnosed' your insurance will cover the cost for all of these tests - if you are lucky enough to have health insurance. Without a diagnosis, I doubt an insurer is going to cover any of these tests.)

So yes indeed, after getting 'diagnosed' you do quite a bit more than just go gluten-free!

Link to comment
Share on other sites
  • 3 weeks later...
JNBunnie1 Community Regular
When you are first diagnosed celiac you should undergo a complete blood count, check all your vitamin and mineral levels, you should get a bone density test, and you should discuss with your doctor any symptoms you have that might be associated with some of the auto-immune disorders that celiac sufferers also tend to get. The bone density test, in particular, seems to be one that many self-diagnosed are skipping. (And, of course, after being 'diagnosed' your insurance will cover the cost for all of these tests - if you are lucky enough to have health insurance. Without a diagnosis, I doubt an insurer is going to cover any of these tests.)

So yes indeed, after getting 'diagnosed' you do quite a bit more than just go gluten-free!

Sorry it took me so long to respond. Does anyone know of any correlation between certain symptoms and bone density issues? Like are you more prone to fracture? What should someone like me do, who was tested every way there is and came up negative? Is it really that likely I'll have bone density issues? I'll never get my insurance to cover that bone density test.

Link to comment
Share on other sites
mushroom Proficient
Sorry it took me so long to respond. Does anyone know of any correlation between certain symptoms and bone density issues? Like are you more prone to fracture? What should someone like me do, who was tested every way there is and came up negative? Is it really that likely I'll have bone density issues? I'll never get my insurance to cover that bone density test.

Well, here's a cautionary tale. When my DH and I first were treated under Medicare (yeah, "oldies") our PCP had us take bone density tests. We had previously tested very well on bone density, in fact mine was so high that they told me if I lived to be 100 I would never have osteoporosis, and my husband's previous test was similar. We were both shocked to see how far our density had dropped, my husband well into osteopenia and me just a little above. At that time we had not considered that either of us were gluten intolerant or celiac (well, maybe I had some niggling suspicions ). However I had been through all the IBS and fibromyalgia BS for years and never mentioned my symptoms to doctors anymore.

Then I developed psoriatic arthritis, and I have an undiagnosed gluten-free sister who has osteoporosis and had a couple of fractures (as did our mother) and who has a celiac daughter, and the rest of my family have/had suggestive symptoms, so I just decided to go gluten-free and my husband decided to do the same since he had had lots of problems with D and it would simplify our lives if we did it together. We both tested very low in Vitamin D and are taking supplements and extra calcium to try to improve bone density. We will have another DEXA scan next year. Fortunately we have good supplemental insurance.

So yes, if you have problems with gluten it affects your absorption of nutrients and puts you at risk of osteoporosis and fractures, no matter what your age. Sorry for the bad news. But the good news is that you can do something about it.

Link to comment
Share on other sites
sbj Rookie
Does anyone know of any correlation between certain symptoms and bone density issues? Like are you more prone to fracture? What should someone like me do, who was tested every way there is and came up negative? Is it really that likely I'll have bone density issues? I'll never get my insurance to cover that bone density test.

Yes, those with osteoporosis are more prone to bone fractures. I am only 45 and I have osteopenia. There are some who feel that osteopenia is a sort of made-up problem (as opposed to osteoporosis). To be safe make sure you are getting enough vitamin D and calcium and try weight bearing exercise. If you are already doing all of this then you might be able to wait until you hit 65 for screening. If you don't have celiac then I don't believe your risk for osteopenia is higher than any other person but who knows? See the list of risk factors below - maybe some apply to you.

BMD testing is recommended for all women over the age of 65. Additionally, postmenopausal women under 65 years who have risk factors for osteoporosis other than menopause (these include a previous history of fractures, low body weight, cigarette smoking, and a family history of fractures) should be tested. Finally, men or women with strong risk factors as listed below should discuss the benefit of DEXA scanning with their doctor to see if testing is indicated.

The following are potential risk factors for osteoporosis that might suggest the need for DEXA scanning:

personal history of fracture as an adult,

history of fracture in first-degree relative,

low body weight or thin body stature,

advanced age,

current cigarette smoking,

use of corticosteroid therapy for more than three months,

impaired vision,

estrogen deficiency at early age,

dementia,

poor health/frailty,

recent falls,

lifelong low calcium intake,

low physical activity,

alcohol intake of more than two drinks/day,

thyroid disease,

rheumatoid arthritis,

excessive caffeine consumption, and

use of oral contraceptive (birth control pills).

Link to comment
Share on other sites
JNBunnie1 Community Regular
The following are potential risk factors for osteoporosis that might suggest the need for DEXA scanning:

personal history of fracture as an adult,

history of fracture in first-degree relative,

low body weight or thin body stature,

advanced age,

current cigarette smoking,

use of corticosteroid therapy for more than three months,

impaired vision,

estrogen deficiency at early age,

dementia,

poor health/frailty,

recent falls,

lifelong low calcium intake,

low physical activity,

alcohol intake of more than two drinks/day,

thyroid disease,

rheumatoid arthritis,

excessive caffeine consumption, and

use of oral contraceptive (birth control pills).

So if I've taken a number of hits and falls and my bones are strangely unbreakable, and I was only sick with Celiac symptoms for 6 months, and I'm not vitamin deficient, and I'm only 24, I'm probably safe saving my (dearly held) money?

Link to comment
Share on other sites
debmidge Rising Star
Well, there is one I know of that recommends a gluten-free diet, and that is ankylosing spondylitis, one of the rheumatoid auto-immune diseases. In fact, that is why I gave up gluten. I figured that if it could help with AS in might also help me with my RA. At that time I didn't even know there was either a blood test or an endoscopic test that could diagnose celiac. It was simply because our house builder had AS and refused to touch gluten. I thought he was going to puke when I offered him scones the first day on the job.

Hi, Just wanted to know what are the signs and symptoms of ankylosing spondylitis and rheumatoid auto-immune disease....I'd help me answer a few questions I had in my own mind about auto-immune symptoms

D.

Link to comment
Share on other sites
mushroom Proficient
So if I've taken a number of hits and falls and my bones are strangely unbreakable, and I was only sick with Celiac symptoms for 6 months, and I'm not vitamin deficient, and I'm only 24, I'm probably safe saving my (dearly held) money?

Yeah, just don't smoke, drink alcohol or coffee, take birth control pills... :)

Link to comment
Share on other sites
mushroom Proficient
Hi, Just wanted to know what are the signs and symptoms of ankylosing spondylitis and rheumatoid auto-immune disease....I'd help me answer a few questions I had in my own mind about auto-immune symptoms

Well, I can't speak for ankylosing spondylitis particularly; our bulder had it in this thoracic spine and I don't know if he was on meds for it, but it did limit his lifting ability (that's what he hired the big guys for :) )and there were a couple of occasions when he had flares and was unable to nail or do much of anything but supervise.

For me my PsA causes pain, weakness, stiffness, inflammation and swelling in fingers, toes, wrists, elbows, shoulders, extreme weakness in legs, fatigue, along of course with those charming psoriatic plaques and delightful pain and itching. My CRP has been as high as 81, currently 33 (should be >5) but I am RF negative. It's not something I would recommend you would want to have :o

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,075
    • Most Online (within 30 mins)
      7,748

    Connie Conner
    Newest Member
    Connie Conner
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @glucel, Unintended weight loss is symptomatic of Thiamine deficiency.  Our bodies use more Thiamine when we are ill and stressed.  Switching to a gluten free diet can also result in a lower intake of Thiamine.   Interesting Reading: Coronary Artery Bypass Graft (CABG) surgery depletes plasma thiamine levels https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874825/ Gluten-free diet intervention reduces thiamine intake in two weeks... https://pubmed.ncbi.nlm.nih.gov/34583628/ This study found normal people, without Celiac Disease and malabsorption concerns, had a drop in Thiamine after starting a gluten free diet.  They went back to eating a gluten containing diet.  We don't get that option.  Gluten free processed foods are not enriched with vitamins like gluten containing counterparts.  Supplementing helps boost your absorption of essential vitamins and minerals.
    • knitty kitty
      Hello, @Neat1, Yes, neck and shoulder pain can be symptoms of Gerd, which is fairly common in Celiac Disease. Ask for a DNA test, too.  Celiac Disease is genetic.  If you've got celiac disease genes, further testing is warranted.  Some people have Celiac genes, but don't have active Celiac Disease.  If you've got symptoms, your genes are probably activated.   Diabetes, anemia and Thiamine deficiency can cause false negatives on antibody tests.  Some people with Celiac Disease are seronegative.   Thiamine deficiency can cause constipation and gastrointestinal symptoms.  Magnesium supplementation can help with that, too.  Nutritional deficiencies like these are common in untreated Celiac Disease. Keep us posted on your progress!
    • knitty kitty
      Not really.  Blood tests for vitamin deficiencies are not accurate.  You can have "normal" blood levels and have vitamin deficiency symptoms before blood levels change.  The brain sends messages to the body to release into the bloodstream any extra vitamins stored within cells of tissues and organs so that important organs like the brain and heart can keep getting a supply.  Even what you've eaten in the previous twenty-four to forty-eight hours can affect blood tests.  Taking vitamin supplements eight to twelve weeks before testing, will give falsely elevated results.   Because tests for Thiamine can be so inaccurate, as well as time consuming and expensive, the World Health Organization recommends taking Thiamine and looking for health improvements.  Thiamine is nontoxic, even in high doses.  Thiamine is water soluble and any excess is easily excreted in urine.  WHO recommends giving 500 mg/day of Thiamine Hydrochloride for several days and looking for health improvements.  Some people with Thiamine deficiency need higher doses (1000 - 2000 mg/day).   Benfotiamine, a lipid soluble form of Thiamine, can get inside cells without using the thiamine transporters on the cell surface,  which shut down during thiamine deficiency.  Thiamine Hydrochloride has to get in by transporters, or by passive diffusion, which requires higher doses.  Benfotiamine has been shown to promote intestinal healing.  300 - 1200 mg/day of  Benfotiamine are required. Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) can cross the blood brain barrier without a carrier cell, so Allithiamine is really helpful with neurological symptoms, brain fog, balance issues, problems swallowing, gastroparesis.  50 - 1000 mg/day of Allithiamine.  Find the best dose for you.   I understand the skepticism about Thiamine.  If I hadn't lived through it myself....read my blog...I was skeptical myself, but I could feel myself dying and was grasping at straws.  Within a few minutes of taking my first dose of Thiamine, I felt better and was astounded at how simple the solution was.   Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.   P.S. Riboflavin Vitamin B2 deficiency has been linked to migraines.
    • trents
      As far as your neck and shoulder pain goes, yes, this could be a symptom of celiac disease as one of the more than 200 symptoms associated with celiac disease is joint pain.
    • trents
      10g of gluten or the amount in about 4-6 slices of bread daily for several weeks should be a sufficient "gluten challenge". Your primary care provider should be able to order those tests.
×
×
  • Create New...