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Does Anyone Else Suspect Other People Have Celiacs?


GlutenFreeManna

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GlutenFreeManna Rising Star

I'm just curious if this is the case with anyone else. The more I learn about celiac's disease and all the diseases that go along with it or can be misdiagnosed when it's actually celiac, the more I suspect that people in my life have it too. Like my grandmother who just had intestinal cancer removed via surgery last year. My parents--Dad had gallbladder removed (as did I), mom has thyroid disease. My cousin with Hashimoto's. My friends have a variety of illnesses--Fibromayalsia, MS, IBS, Arthritis, Candida, Chronic Adult Acne, endometriosis. I want to tell EVERYONE they should consider celiac's disease and get tested for it. But I also don't want to put my nose in where it doesn't belong. I'm not a doctor and I diagnosed myself because I couldn't find a doctor that would do testing. But I totally understand most people are not going to make a drastic change in their eating without some medical test telling them they should. I was at a point of desperation; I was so ill I was willing to try anything. Most my friends see their illnesses as minor annoyances (except for the one with MS--she's really hurting, but won't consider diet change at all) and accept that they will be on medication the rest of their life. I tried to bring it up with my friend with MS when we were having a heart-to-heart (many of her neuro symptoms are the same as mine were and she always thought I had MS) and suddenly got told it was none of my business. I've been told by other "friends" that they don't believe Celiac is a real disease, that it's just a fad diet, that I'm a hypochondriac or it's a placebo effect. I don't want to hurt relationships, but I want to get awareness out there somehow. I've started to blog a little and sent the blog links out on my facebook, hoping that my friends will read about how amazing the gluten free diet is and will want to look into it, but what else can I do? Am I the only one that suspects celiac or gluten intolerance whenever someone has another illness?


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ravenwoodglass Mentor

No your not. It is too bad that you couldn't find a doctor to test you since if one family member has celiac the NIH states that every one of their first degree relatives should be tested.

In more celiac savvy countries they screen for celiac at age four, again in the teen years, even if the person is not symptomatic. When symptoms develop it is the first thing tested for not the last and the average time for first symptoms to diagnosis is a couple weeks not the 10+ years it is here in the US.

Medicine here is slowly coming around, at least now they advise all Type 1 diabetics to be tested but it still has a long way to go.

So much money could be saved, and lives but unfortunately there is nothing you personally can do about it. At times once family members have seen the turn around in our health issues they will stop thinking it is a made up disease and agree to get themselves tested but not always.

All you can do is mention it once, let them see your obvious recovery and then let it drop. Otherwise you risk alienating your freinds and family. And once that happens you can't always get them back.

polarbearscooby Explorer

I suspect my Grandma who's had life long stomach trouble, thyroid problems, colon cancer, breast cancer, failure to thrive, she's always been skinny as a rail and she gains weight and looses it all the time....

I KNEW my cousin had Celiac as soon as I looked at him, his face is all swollen, he's HUGE but he doesn't weigh that much, he can't loose weight, he retains water, gains and looses pants sizes as fast as I did, and spends hours a day in the bathroom....

I told him about Celiac and explained how I felt before the diet and after and he just starting talking about how it sounded exactly like all his symptoms and he'd never met anyone who understood before....he's on the gluten-free diet now for about 2 1/2 weeks and doing great! :)

I wish my Grandma would get tested tho....she's just very set in her ways....

kwylee Apprentice

I understand. I feel frustrated too.

Gluten sensitivity is genetic for me. My older sister was diagnosed with Type II Diabetes a year ago. Since then she is making her own "yummy low carb wheat bread", and eating more bread and whole wheat pasta than she ever has. But despite sticking srictly to her diabetic lifestyle (she has never been fat), she still keeps a strangely elevated blood glucose. I told her that within weeks of going gluten & casein free, my glucose level that had been almost pre-diabetic for the past 8 years, suddenly dropped 15 points to within normal, along with my cholesterol and greatly improved Vitamin D level.

I can't swear that she inherited the same gene as I have, but I hope she gives this a try because it would kill me to know in my heart that there was something I could do to literally save my sister's life, but I didn't push hard enough because I didn't want to be a pain in the rear. She lives in another state and we do not see each other often but I did get her to say she will talk to her doctor about it next time she has a visit, but I pray that the doctor will not discourage her because so many physicians are underinformed about this.

But it's not just my sister. The girl in the office next to mine suffers from fibromyalgia, another from leg neuropathy, another's mother from Lupus. They are all around me, and I tell whomever I can because going gluten free was the best thing I ever did (even with the uncomfortable period of adjustment I went through), but they are dubious that the facts apply to them. I only hope that with the many individuals getting relief from a gluten free lifestyle, that the news will spread and everyone will be aware that they can feel SO MUCH BETTER, raise their quality of life, and quite possibly alleviate many common "mysterious" illnesses.

GlutenFreeManna Rising Star

No your not. It is too bad that you couldn't find a doctor to test you since if one family member has celiac the NIH states that every one of their first degree relatives should be tested.

In more celiac savvy countries they screen for celiac at age four, again in the teen years, even if the person is not symptomatic. When symptoms develop it is the first thing tested for not the last and the average time for first symptoms to diagnosis is a couple weeks not the 10+ years it is here in the US.

Medicine here is slowly coming around, at least now they advise all Type 1 diabetics to be tested but it still has a long way to go.

So much money could be saved, and lives but unfortunately there is nothing you personally can do about it. At times once family members have seen the turn around in our health issues they will stop thinking it is a made up disease and agree to get themselves tested but not always.

All you can do is mention it once, let them see your obvious recovery and then let it drop. Otherwise you risk alienating your freinds and family. And once that happens you can't always get them back.

Thank You ravenwoodglass. I probably could find a doctor to diagnose me now. I found one listed as the local Celiac group consultant that would probably do the testing. But, to me, it's not worth the pain and health risk of going back to eating gluten. I'm seriously considering getting the genetic test even though I know it's not diagnostic. The problem with my family seeing how much better I am is that they live 1000 miles away in another state. I haven't lived near my parents since I moved out at 18 to go to college out of state. We are not really close, but talk on the phone every few weeks. I've only been back to my hometown for holidays and a few summer vacations. The last two years I missed Thanksgiving and Christmas because I was too sick to travel. So they know I was really sick, but they acted more hurt that I didn't come than concerned about my health. Only my husband knows how bad I got and completely supports me and understands how much the gluten free diet has improved my health.

summerteeth Enthusiast

I definitely feel like members of my dad's side of the family (namely my ninety year old grandma and my uncle) have celiac. My grandma had intestinal cancer fifteen years ago and my uncle has had "IBS" for a very long time.

My mom approached my grandma after my diagnosis and my grandma said that their family is normal and everyone has stomach issues (constipation is normal, basically??)

GlutenFreeManna Rising Star

I suspect my Grandma who's had life long stomach trouble, thyroid problems, colon cancer, breast cancer, failure to thrive, she's always been skinny as a rail and she gains weight and looses it all the time....

I KNEW my cousin had Celiac as soon as I looked at him, his face is all swollen, he's HUGE but he doesn't weigh that much, he can't loose weight, he retains water, gains and looses pants sizes as fast as I did, and spends hours a day in the bathroom....

I told him about Celiac and explained how I felt before the diet and after and he just starting talking about how it sounded exactly like all his symptoms and he'd never met anyone who understood before....he's on the gluten-free diet now for about 2 1/2 weeks and doing great! :)

I wish my Grandma would get tested tho....she's just very set in her ways....

Thank you for sharing your experiences. It's encouraging to me that you at least convinced your cousin to try the diet. So there is hope that some people will listen.


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lynnelise Apprentice

I've tried to get my husband to see if he could be celiac because he occassionally has elevated liver enzymes, acid reflux, and D. He won't make an appointment but often says it would be a good idea to try the diet but then he never does.

I don't say much to my friends. I suggested to one friend that a gluten free diet was shown to help PCOS which she suffers from and she got very defensive and said gluten was my problem not hers. I leave her alone but I am very worried about her health. She has an extreme amount of abdominal fat and her blood pressure is very high. She takes handfuls of pills daily and she is only 25. She eats an insane number of carbs, usually gluten containing ones which is bad for her blood sugar issues as is.

polarbearscooby Explorer

Thank you for sharing your experiences. It's encouraging to me that you at least convinced your cousin to try the diet. So there is hope that some people will listen.

No Problem :)

Now to convince my Grandma! =^.^=

Skylark Collaborator

I don't make any suggestions to friends and family, but I'm pretty open about the diet and how much better I feel. In the past couple years, three people (including my Mom) have decided to try going gluten-free and felt a lot better.

Thing is, it's a hard diet. If you push, people resist. If they talk to you, make the connection with their own symptoms, and make their own decision to try it, they have "ownership" and can stick with it much more easily.

scarlett77 Apprentice

I suspect that several of my husband's family members have Celiac. One nephew in particular has had major bowel issues almost all his life. I provided information to his mom (my sister-in-law) and she seemed receptive at the time but has never bothered to test him or change his diet. She and her oldest daughter also have severe stomach issues. She also had to go through a hysterectomy (at 38) because of fatty tumors. It is frustrating. You can lead a horse to water but you can't make them drink.

I think part of the problem is that Celiac is not as well known and the fact that the symptoms can be so incredibly varied from one person to the next. Because of the nature of this disorder if left unchecked it can ultimately increase the odds of other disorders, viruses, cancers, etc. I can see how it may play with your mind when you know someone with MS and you think "Hmmm, I wonder if s/he has Celiac." But you do have to stop yourself at a certain point because not EVERYONE with MS or cancer has it because they are Celiac. My mom has MS and I do not think she has Celiac. I mean we want to spread the word and educate, but being pushy can be a turn-off. A lot people give negative reactions to eating gluten free. The first thing out of everyone's mouth anytime I explain Celiac Disease is "That really sucks!" This is exactly the kind of attitude that I am trying to change.

rdunbar Explorer

According to Robb Wolf who is a bio chemist and has done research on this, gluten is a gut irratant and it causes inflammation period.

This doesn't mean everyone has full blown celiac, but it is harmful to everyone. Check out his podcast called paleosolution.

The more I've learned about this the more I observe how peoples health seems to be impacted negatively by gluten

It drives me crazy how obvious it is what's going on and how oblivious and defensive people can be about this

Skylark Collaborator

I just wrote off for a very interesting article showing effects of alpha-gliadin peptides on a tissue culture line of intestinal cells. The alpha-gliadin triggers a pro-inflammatory cytokine called tumor necrosis factor alpha. The article is so interesting because as you are saying it hints at non-celiac pathways for gluten inflammation.

bigbird16 Apprentice

My dad was the one who got me to thinking about gluten intolerance in the first place. "Your mother had a wheat allergy." I tested genetically as double DQ7. I saw some of the same skin issues between us. He has always had a lot of digestive issues. He mentioned that at a diabetes support group the doctor had said something about a connection between gluten and diabetes. Yes, I told him, and the skin issues are tied to dairy. I suggested to him that he might give gluten and dairy free a try. He said he could never ever give up cheese (Behold the power of cheese!). He says he'll eat gluten-free, df, sf when I visit if that's what I cook, but as a lifestyle change, no way. I've said my piece, so I've dropped it even though it makes me very sad to see. Pushing makes him dig his heels in deeper.

I saw a friend's baby recently, and she had a horrible rash on her face. My friend said her doctor had her on an elimination diet to see if something in her diet was passing through in the milk; the doctor suspected wheat. She asked me for meal ideas and said she could never do this all the time. Keep it simple--rice, potatoes, veggies, and meat. Two weeks later she said the eczema hadn't cleared. She hated limiting her choices but really liked the spelt muffins she'd gotten to substitute for toast. (Spelt! Yikes! That's an elimination trial flushed down the toilet.) I suggested that if the "eczema" didn't clear up it be tested for DH; if it's DH, that's a clear diagnosis. Say it and leave it. Hopefully it's really just eczema and nothing to do with food issues.

Plant the seed. A person will pursue it or not.

ravenwoodglass Mentor

She hated limiting her choices but really liked the spelt muffins she'd gotten to substitute for toast. (Spelt! Yikes! That's an elimination trial flushed down the toilet.)

I do hope you told her that spelt is wheat and suggested true gluten free subs for those muffins like Kinnickkinik english muffins.

Also keep in mind that excema is also associated with gluten for some folks so even if the babies rash isn't DH it could still be caused by the gluten.

GlutenFreeManna Rising Star

I saw a friend's baby recently, and she had a horrible rash on her face. My friend said her doctor had her on an elimination diet to see if something in her diet was passing through in the milk; the doctor suspected wheat. She asked me for meal ideas and said she could never do this all the time. Keep it simple--rice, potatoes, veggies, and meat. Two weeks later she said the eczema hadn't cleared. She hated limiting her choices but really liked the spelt muffins she'd gotten to substitute for toast. (Spelt! Yikes! That's an elimination trial flushed down the toilet.) I suggested that if the "eczema" didn't clear up it be tested for DH; if it's DH, that's a clear diagnosis. Say it and leave it. Hopefully it's really just eczema and nothing to do with food issues.

Plant the seed. A person will pursue it or not.

Wow, this is almost exactly the conversation I had with a friend about her toddler. She brought it up with me because I told her I was gluten-free. The doctor suspected "wheat allergy" and told her to eliminate wheat for two weeks. When she said that the diet didn't work I asked what she fed him. She said mostly he ate Cheerios! She was sure they were okay because they were oats. She didn't want to listen to me anymore when I told her they have wheat in them. She started to say that it was just too much work to check all those labels and it should be okay if they don't have wheat as the main ingredient. :blink: I left it at that because I didn't want to push. I guess people really have to want to make the change...I ache for that little boy though every time I see him...he was having bloody D, not just eczema. :(

detritus Apprentice

I'm just curious if this is the case with anyone else. The more I learn about celiac's disease and all the diseases that go along with it or can be misdiagnosed when it's actually celiac, the more I suspect that people in my life have it too. Like my grandmother who just had intestinal cancer removed via surgery last year. My parents--Dad had gallbladder removed (as did I), mom has thyroid disease. My cousin with Hashimoto's. My friends have a variety of illnesses--Fibromayalsia, MS, IBS, Arthritis, Candida, Chronic Adult Acne, endometriosis. I want to tell EVERYONE they should consider celiac's disease and get tested for it. But I also don't want to put my nose in where it doesn't belong. I'm not a doctor and I diagnosed myself because I couldn't find a doctor that would do testing. But I totally understand most people are not going to make a drastic change in their eating without some medical test telling them they should. I was at a point of desperation; I was so ill I was willing to try anything. Most my friends see their illnesses as minor annoyances (except for the one with MS--she's really hurting, but won't consider diet change at all) and accept that they will be on medication the rest of their life. I tried to bring it up with my friend with MS when we were having a heart-to-heart (many of her neuro symptoms are the same as mine were and she always thought I had MS) and suddenly got told it was none of my business. I've been told by other "friends" that they don't believe Celiac is a real disease, that it's just a fad diet, that I'm a hypochondriac or it's a placebo effect. I don't want to hurt relationships, but I want to get awareness out there somehow. I've started to blog a little and sent the blog links out on my facebook, hoping that my friends will read about how amazing the gluten free diet is and will want to look into it, but what else can I do? Am I the only one that suspects celiac or gluten intolerance whenever someone has another illness?

Yeah, I had the same type of problems with my family. I self-diagnosed for Celiac's when my sister and I started talking about our similar digestive issues. Then I found out my brother had a positive antibody test, so he went off gluten for a year, but said he didn't notice anything different so he started eating it again. I'm sure he has "silent" celiac's. And my sister is convinced she has IBS. She says eating bread with each meal will help :blink: I really want her to at least be tested, but I feel like she doesn't want to find out that she can't eat bread and pasta anymore. It came to a head at a family dinner a couple months ago. They were pushing me about it, and then finally my brother said," well, so what if I keep eating gluten, what's going to happen?" and I yelled out "CANCER!" The whole table got really quiet for a moment, and then the subject got changed. I think at this point they'll have to make their own decisions about their health, and I have to let it go, as much as I want to "save" them:(

bigbird16 Apprentice

I do hope you told her that spelt is wheat and suggested true gluten free subs for those muffins like Kinnickkinik english muffins.

Also keep in mind that excema is also associated with gluten for some folks so even if the babies rash isn't DH it could still be caused by the gluten.

Spelt = wheat was met with a sigh and shrug. She didn't want the expense of buying foods that wouldn't be on the menu in a couple of weeks. "Have you seen the prices? Holy crap!" She said she also couldn't take it anymore near the end of the trial and ate regular toast. (head-smacks-desk) So what was the point of taking the baby for evaluation? The whole attitude was a feeling that this is all temporary; I think the thought of possibly permanent changes scared her (yes, been there; that's what friends and the Forum are for). I talked to her about basic label reading and choosing products with the-fewer-the-better ingredients for simplicity's sake. She was overwhelmed, as most of us are at the beginning, and the conversation didn't go far. I said she could call any time if she had questions or needed an ear. She is back to her regular diet.

wub.gif Kinnikinnikwub.gif Mmmmmmmmmsmile.gif

stef-the-kicking-cuty Enthusiast

Holy Cow, GlutenFreeManna, did you just write about my life, or what? Grandmother intestinal cancer, mother breast cancer, both of them gut issues. Diabetes and thyroid issues are in the family also. I even have a cousin with MS, who said, she already tried the glutenfree diet and "it wouldn't work". I do not know her personally very well, but my mother told me, that she tried and that was, what she would have said then. As I can imagine the case, she tried it and had no idea, she was eating gluten after all. She's almost dead, rolling around in a wheel chair. Is barely the shadow of herself, but does NOT want to hear this subject anymore. Even though, this saddens me, I believe, I can help no more. The day she dies, I don't know, what I do. Spend the day in church probably and ask for forgiveness, that I didn't have the guts to say more... :( but then again, I hardly know her (it still makes me feel bad).

By the way, everything said on here, I came to find, it's true and sad. Personally I think, that if there would be more tasty glutenfree options and cheaper ones out there, people would consider it more. The last few years we've come a long way. Only in 2004, when I got my diagnosis. I'm half self diagnosed, too, by the way. Since back then, the options got soooo much more and we're getting better with every week that passes. In a few years it will be so obvious, so easy to buy and everywhere and the doctors know more, that all these people might come to a different conclusion than now. Just wait and see. And keep praying my friends! Prayer in number helps. If we all do this, we may have more chances.

i-geek Rookie

I've got autoimmune disease on both sides of the family.

Mom's side is rheumatoid arthritis and autoimmune thyroid disease (mom has neither), plus I learned recently that one cousin avoids gluten for health reasons and one of my mom's older sisters avoids wheat whenever possible because it "doesn't agree" with her. Mom has had unexplained iron-deficiency anemia and strange allergies for her entire adult life and is now osteopenic.

Dad's side has rheumatoid arthritis and diabetes (along with the metabolic/cardiovascular disorders often seen in recent immigrant populations to the western diet- Dad's parents were both from Mexico)- and ovarian cancer for my grandmother). Dad bloats up like crazy when he eats regular pasta and lately has been paying attention to his health after eating gluten foods. He's noticed that he feels a lot better when he takes soup or salads for lunches rather than sandwiches.

I've definitely got my parents thinking about the diet. My mom tried cooking for me not long after I went gluten-free and I assumed that the dish she made (which she's made for as long as I can remember) was totally from scratch. We found out the hard way that the recipe called for a can of Campbell's tomato soup. She was appalled to learn that there was wheat flour in the soup and now reads labels carefully. She's going through the shock of realizing how much garbage is put into our food (something most people don't think about until they're forced to read labels). I've also given them some things to try and they were big fans of the quinoa pasta that we use, especially since Dad didn't bloat up after eating it. They can see how much better I feel and I can tell from their questions and comments that they're considering their own situations.

Almendra Apprentice

Something's in my family... autoimmune issues are one generation behind me...

One had Type 1 diabetes that began at ~25 years old and continued to battle for her life until shortly before 50 years.

Another - rheumatoid arthritis that hit so hard at 39 that she couldn't get out of bed. Always had stomach issues. Is loosing the ability to function independently easily (weakness and hand deformities) before 60.

Another has lupus and thyroid issues.

...Those are just the ones who talk about what is happening to them.

No one wants to get tested. Especially for family members on a strict budget (and for a individuals that are not very comfortable with using technology). I can't blame them for avoiding it - I avoided it for over a year. I can only hope that ONE - they don't wait as long as I did and TWO - that they don't have it.

Skylark Collaborator

It's taken Mom two years to finally decide that gluten-free means she can't pick the breading off her Chick-Fil-A chicken strips or eat Chinese food with soy sauce. Her system finally settled down to where she realized she was reacting to things like that. I had tried to explain the diet before, but as I said earlier in the thread, she didn't "own" it.

By the way, she's DQ2 but negative blood tests and biopsy. Now she's telling me I can't be celiac because she's not. She seems to think it matters as far as diet whether or not I'm actually celiac or merely gluten intolerant. My body doesn't care about a label. Gluten is not a food substance and my body ejects it within hours if I attempt to eat the stuff. :lol:

WheatChef Apprentice

So far I'm 4/4 out of family members I've told to try out the diet that have responded positively in health. Unfortunately I think there's only maybe one more that needs to try out the diet but she's refusing to even acknowledge that it might help even though she's got numerous serious symptoms.

Need to get my genetic testing done, it's obscene that my father and his 3 sisters would all have this.

Black Sheep Apprentice

The day she dies, I don't know, what I do. Spend the day in church probably and ask for forgiveness, that I didn't have the guts to say more... :(

And keep praying my friends! Prayer in number helps. If we all do this, we may have more chances.

Amen! ;)

And Stef, don't beat yourself up, thinking you should maybe say more. Seems to me like you've described a perfect WWJD moment here! :lol: But seriously, look at what He did. He came and said what He had to say, and then left it at that. If people wanted more information, He gave it. If they didn't want to hear it, He didn't follow after them and keep hounding them (btw I'm not saying that's what you're doing!). If they got angry and wanted Him to go away, He went elsewhere.

Sounds like you've done a great job of giving the info; now it's up to them. And boy, can I identify with you and everyone else on this thread, because I'm going through the same thing here. So many people with so many horrendous, even potentially fatal health problems, yet mention gluten as a possible culprit and they immediately shut down and shut me out. :( It's funny, but I was thinking about that just a few hours ago. And I was thinking, o.k., suppose I'm at a church potluck or a family dinner. Now suppose someone is hardly eating, and when questioned starts telling the group about these strange symptoms she's having; the first and worst being that, for no apparent reason, she started gaining weight. She's young and has always been slender and active, so no one would try to blame age or hormones. She assures everyone that she's careful of what she eats and works out like a fanatic, doing a variety of different workouts, yet she only gets fatter. Then she complains that her hair is falling out like crazy, her normally oily skin has gotten all dry and flaky, and she's so tired all the time she can barely function. "The only reason I can even manage to work out is sheer stubbornness and willpower," she moans, "because I sure as heck don't have any energy. And working out makes me feel even worse, not better."

Now at this point, I'd almost bet the farm that at least one person chimes in with, "Have you your thyroid checked yet?" And from there the conversation turns to hypothyroidism, the experiences some there may have had with it or with someone they love who has it; the symptoms, treatment, the simple test, etc. Now I think I'd also bet the farm that by the time all is said and done, the young miserable woman has brightened considerably and said something like, "Maybe that's it! Why didn't I think of that? Why didn't my dr. think of that? I'm calling my dr. tomorrow and saying I want to be tested, and if he/she won't do it, I'll find one who will!"

People are so much more reasonable when it comes to things like that, but by golly, mention gluten or celiac and they clam up and act like you're trying to hand them a death sentence. :angry:

Stacy hated pancake Sunday Newbie

I think my husband has it passed down from his mother's side and I believe have it from my mother's side passed down from her father side. I believe both of our children together have it....however my husband is stubborn as the day is long and has no interest in being a 'food freak'..as he calls me. He also has no interest in the house being a gluten-free zone or taking the occasional pizza or Happy Meals away from the kids.

Now he takes this big blowhard obstinate attitude toward gluten free eating for himself and the kids...yet will go out of his way to make sure I don't consume any gluten because of the effect it has on me...which he sincerely admits is real and not imagined on my part. I hate going out to eat because the chef always has to get involved and it limits restaurant choices for everyone else...yet my husband tells me that I am not the 'big pain in the butt' that I think I am and not to feel bad that my food is going to hold up the table. I keep the dogs wheat and corn free and he wholeheartedly agrees and encourages it.

I look at my kids and I don't want them to suffer for decades like I did....but my husband will spite me by handing them a cookie after I have fed them gluten-free all day just to prove that they can eat it without having the same reaction as I would...he doesn't hear me when I tell him I could eat gluten everyday for 6 & 8 years and no one is going to notice the difference in me after one cookie either because the gluten is already in my system.

I am seriously considering whether this situation is divorce worthy...even with an official medical diagnosis on the kids he is likely to ignore it because 'it's too hard' or 'some fad' that means nothing long term. If he wants to go through life with a bloated gut, constant stomach issues, constant constipation and all over pain to the point where he has wondered out loud if he has fibromyalgia....that's his choice...but to make the kids suffer is absolutely insane, cruel, ignorant(I could go on for days)...at least if I stay and have influence 24/7/365 I might be able to keep the kids gluten free long enough to prove my point..I would even let him claim that he and he alone decided that they should go gluten free.

As to the others they just don't understand it..don't want to understand it. My MIL wanted to make me gluten-free chicken parm so instead of flour ...she used....crackers...Ritz crackers...and even after I explained it she still looked confused. My mother still bakes me cakes that I cannot eat...realizes after she shows me and says 'oops..you can;t eat this can you?' ...every single time...you would think after 3 or 4 birthdays she would remember before going to all that trouble.

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    • knitty kitty
      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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