Jump to content
  • 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 Having Trouble Understanding


purplelion

Recommended Posts

purplelion Newbie

Hi there everyone :) Any other husbands/wives having trouble understanding what you are going through? My hubby is a big dutchman, fit as a bull, never been sick in his life except for work related injuries. He can't see that gluten, milk/soy, dairy or additives/preservitives etc can be making me so sick. I am in my 4th month of elimination and this process has him spooked as he thinks I will end up with nothing to eat and fears I will end up like 'Monk" from the TV series. I have tried to tell him that I need knowledge through study to gain power to find out what is making me so sick and with avoidance hopefully get better. He has seen me in 'attacks' lasting for up to 4 hours and yet he can't grasp the concept that my life has to change if I am to get better, and knowledge, elimination or avoidance is the key. But first I have to know through trial and error. Now that Gluten/Dairy/Soy have been removed so many other things are surfacing it even makes my head spin at times.

I welcome your input.

Thanks,

purplelion


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



Celiac.com Sponsor (A8-M):



nasalady Contributor
Hi there everyone :) Any other husbands/wives having trouble understanding what you are going through? My hubby is a big dutchman, fit as a bull, never been sick in his life except for work related injuries. He can't see that gluten, milk/soy, dairy or additives/preservitives etc can be making me so sick. I am in my 4th month of elimination and this process has him spooked as he thinks I will end up with nothing to eat and fears I will end up like 'Monk" from the TV series. I have tried to tell him that I need knowledge through study to gain power to find out what is making me so sick and with avoidance hopefully get better. He has seen me in 'attacks' lasting for up to 4 hours and yet he can't grasp the concept that my life has to change if I am to get better, and knowledge, elimination or avoidance is the key. But first I have to know through trial and error. Now that Gluten/Dairy/Soy have been removed so many other things are surfacing it even makes my head spin at times.

I welcome your input.

Thanks,

purplelion

My husband had his doubts too, and all I was eliminating was gluten! He said he would go along but I could tell he didn't understand. I put the entire family on a gluten free diet in January, and he agreed to it (reluctantly) mainly because I proved to him I could still make pizza gluten free! ;)

Until the SuperBowl.

He decided to buy some beer (with gluten) to drink over the weekend. A few days later he broke out in the nastiest case of Dermatitis Herpetiformis (compared to pics on the Internet). He had blisters ranging from tiny to the size of a quarter.

It turns out that he has celiac disease too! So now he's a believer! :)

Of course, I would never wish that on your husband. But I think as time goes on and he sees how much better you feel, he'll realize that the elimination diet was worth it. Just ask him to be patient and look at the results.

Good luck!!

JoAnn

ang1e0251 Contributor

I think it is VERY hard for healthy people to understand this disease. I found out when I had carpal tunnel that if people couldn't see a cut or a cast they were totally unsympathetic. Once I started to where a brace, people constantly came up to commiserate with me.

I guess I would just ask him has he ever had the flu or a hangover? Imagine feeling like that every day? Also to those who cannot imagine that what you eat can influence your body, would they put sugar into their car's gas tank? No, because an engine cannot function on sugar. Sugar will harm it. Our bodies are engines too. Your gas tank cannot function on gluten even though his can. When he sees you sick, that is your engine ceasing up. It doesn't have another way to tell you it cannot function on gluten.

Even though I had a very good friend with celiac disease, I only had a very elementary idea of what that meant until I went through it myself. I'm still learning new things about celiac disease all the time. If I don't completely understand it, how can someone who doesn't have it? Be patient with him and try to help him relate to it in terms that are meaningful to him like cars if he is a car guy, computers if he is a computer guy, etc. He probably is scared when you feel bad and is in a little denial too. He just wants you to be well.

Tica Apprentice

We have a similar problem with our family. My 12 yo daughter has celiac and my mother in law just does not get it. She is always saying thing slike, "how can one small piece of cookie hurt for crying out loud? She looks fine to me - why can't she eat like everyone else?" My daughter is very patient and simply tells me that it's OK - b/c grandma just "doesn't understand". I just wish my mother and law stop the comments. Just because she "looked healthy" on the outside before she was diagnosed, does not mean she does not haev celiac and can eat gluten. My daughter did not gain wait (actually lost a pound) between the age of 9 and 11. She may have "looked" healthy, but her body was starving from the damage caused by gluten.

Some poepl just need to either learn about celiac and gluten-free diets or keep their mouths shut!!

:)

I am done venting now :) enjoy your day :)

Asillem4 Newbie

My husband has been very supportive but still has some issues believing I've been glutened at times. He thinks heat kills it. He has no scientific evidence, just his belief. He sees me ill after a BBQ but refuses to think the garlic bread we've put on the grill for YEARS could possibly leave a residue behind that would effect me. So I am miserable for up to 6 hours with bloat, restless legs, rashes, pain, gas, sleeplessness, exhaustion, and he refuses to believe it could be from the grill.

I told him the other night (after two episodes that week) that I'm going back to cooking my own meat and I don't want BBQ anymore.

I know he's bugged because I'm so picky now but I really HATE the pain. It's not fun. It makes me so mad and sad and depressed that I want to crawl into a cave and die. If all it did was give me gas I'd be fine..but this is severe pain (as you all know).

Birdie-Is-Tiny Rookie

Can definitely relate. My family is so skeptical when it comes to cross contamination. My sister rolls her eyes like I'm just looking for attention. My dad has trouble understanding my nervousness about shared cutting boards. My mom will be catious but kind of acts like she's just doing it to humor me and doesn't think it's neccessary. My whole family has this attitude that says, "It can't really be that bad." It is incredibly frustrating to be treated like I'm paranoid, crazy, or persnickity. I am a fairly intelligent young woman and I really dislike being treated as though I don't understand my own medical condition. It hurts that my own family could believe that I would be such a pain in the butt about having non-contaminated food if it wasn't required. I'm not a very assertive person by nature but I have learned that I need to be in order to avoid stomach pains, irritability, depression, and severe nausea. It's so isolating that everything involving food turns into a huge ordeal.

tarnalberry Community Regular

I suppose I'm not very tolerant of those who don't understand *AND* won't cooperate. It's not their choice what you eat- it's yours. If it's a little more difficult to eat communally (and it doesn't have to be - my picky husband and glutenfree/dairyfree self eat together just fine), well, you find a way to work it out. But if you're not going completely ridiculous (and that's not to be judged solely by him), then he just needs to *respect your decision to stay healthy*.


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



Celiac.com Sponsor (A8-M):



mysecretcurse Contributor
We have a similar problem with our family. My 12 yo daughter has celiac and my mother in law just does not get it. She is always saying thing slike, "how can one small piece of cookie hurt for crying out loud? She looks fine to me - why can't she eat like everyone else?"

I would chew someone out for that.

This is a medical condition. Tell her to do some research and educate herself before she runs off at the mouth and makes herself look like a fool. I'm so glad my family isn't like this.

To the OP- what DOES your hubby suggest you do? I mean, what is his take on it? I don't get it. You say he's seen you sick. Does he think you're faking or what?

Leiana Rookie
Hi there everyone :) Any other husbands/wives having trouble understanding what you are going through? My hubby is a big dutchman, fit as a bull, never been sick in his life except for work related injuries. He can't see that gluten, milk/soy, dairy or additives/preservitives etc can be making me so sick. I am in my 4th month of elimination and this process has him spooked as he thinks I will end up with nothing to eat and fears I will end up like 'Monk" from the TV series. I have tried to tell him that I need knowledge through study to gain power to find out what is making me so sick and with avoidance hopefully get better. He has seen me in 'attacks' lasting for up to 4 hours and yet he can't grasp the concept that my life has to change if I am to get better, and knowledge, elimination or avoidance is the key. But first I have to know through trial and error. Now that Gluten/Dairy/Soy have been removed so many other things are surfacing it even makes my head spin at times.

I welcome your input.

Thanks,

purplelion

wow my family is literally falling apart because of my illness. husband has got to be the most ignorant and stupid male on this planet. he just dont get it or he dont care. i think it is the latter with a little bit of the other thrown in. this illness might very well cause the end of our marriage. soooooo extremely non-supportive. i am totally going thru this myself. and yess i am venting. i am a bag of bones and he CANT see i need help. grrrrrrrrrr. he took me for my endocope two days ago and jerk all the way there. i was crying once we got there and the gastro dr thought i was going to walk out and not have the test done. i am rambling on here...better go. thanks for listening :angry: :angry:

Leiana Rookie
wow my family is literally falling apart because of my illness. husband has got to be the most ignorant and stupid male on this planet. he just dont get it or he dont care. i think it is the latter with a little bit of the other thrown in. this illness might very well cause the end of our marriage. soooooo extremely non-supportive. i am totally going thru this myself. and yess i am venting. i am a bag of bones and he CANT see i need help. grrrrrrrrrr. he took me for my endocope two days ago and jerk all the way there. i was crying once we got there and the gastro dr thought i was going to walk out and not have the test done. i am rambling on here...better go. thanks for listening :angry: :angry:

correction.....he b%$@#ed all the way there. ( dont know what the jerk meant except he is one)

mushroom Proficient
My husband had his doubts too,

Until the SuperBowl.

He decided to buy some beer (with gluten) to drink over the weekend. A few days later he broke out in the nastiest case of Dermatitis Herpetiformis

JoAnn, I just read your post. Same thing happened with my husband. Went along with the diet with me, cheated with beer and sourdough bread, and blam!! DH. Amazing, huh??

ghostcat Newbie

I'm not defending any insensitive people, so don't misunderstand me, but it's kinda human nature. People are fallible....maybe it's because they are scared, maybe it's because they really don't get it. Like someone mentioned with the arm sling.....it's psychological.

I suffered from hypothyroidism for years before being diagnosed.....mainly because despite muscle ticks, crippling joint pain, hair loss, trouble breathing, seeing, etc........the doctor's who saw me saw a cheerful, young slim woman in front of them so basically told me; you're not fat and depressed enough to be hypothroid! Whhaaaaa? It happens to everyone, don't feel bad.

My hubby cooks for both of us, but we've eaten seperate meals for years.......I was vegetarian for years and frankly I don't want some poor slaughtered lamb or cow infecting my veggies! When we had a BBQ a few years back, the vegetarians demanded a SEPERATE GRILL. Not only that, he's started eating veggie meals half the week. People should respect you wanting to eat things how you want to eat them, REGARDLESS of WHY you do! Just be patient and persistent.....think of it as training them and empathize with why they might not understand it initially. Not every man is instantly considerate where they give up everything they eat and love just because you do (kudos to those lucky ladies), but that doesn't mean it's one extreme or the other. My hubby rarely starts off mister sensitive, but he always comes around.......think of it that you cannot control their behavior or reactions but you can control yours and just be persistent.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

    3. - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

    4. - knitty kitty replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

    5. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    MaryannHall
    Newest Member
    MaryannHall
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
    • knitty kitty
      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • knitty kitty
      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.