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Did Your Partner Support You ..........
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Hi so i'm just curious when you first got diagnosed with celiac did your partner support you? I feel it is stressful changing your diet if your like me not very good at cooker anyway. We have just moved country and the food is more expensive here and we struggle finding things to eat, food shopping in the UK was never a problem......i miss it! :(

ANYWAY so food shopping can be a pain here now and my husband is being really unhelpful hes making me feel like i'm such a burden, as i havent had a full diagnoses i have the symptoms its in the family but the doctors can't tell me for sure but they think its likey so they want me to go gluten free............so i just feel it would be easier to put it off after xmas is this okay?

Thanks x

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If you think you have Celiac go gluten free right away you don't want to cause any more damage.

What tests did you have done and what were the results? What are your symptoms?

My partner was semi supporting until he heard it from the doctor himself that eating gluten can cause me more damage and money than going gluten free.

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Did you have a positive blood test? I would think that the fact that the doctors want you to be gluten-free would be enough for your hub.

I think you could wait until after Christmas if you want. It depends on how bad you feel.

You could use the month to research foods and simple recipes. You could cut back on gluten.

We have many recipes and threads on here about inexpensive gluten-free foods. Foods that are naturally gluten-free like eggs, potatoes, rice, fruits, veggies, etc.

Edited to say: just wanted to say....I saw your post on " basic dinners". Look over there for ideas for food.

Edited by kareng
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If you think you have Celiac go gluten free right away you don't want to cause any more damage.

What tests did you have done and what were the results? What are your symptoms?

My partner was semi supporting until he heard it from the doctor himself that eating gluten can cause me more damage and money than going gluten free.

I had blood tests which came back positive I got referred to the hospital for a Gastroscopy, I then had a blood test taken again a few days before the Gastroscopy and it came back fine?? I was told if i have the Gastroscopy they could tell for sure if i had celiac BUT they still don't know for sure, the doctor said i have a red bowl but no damage and thinks its likey that i have celiac but cannot tell me for 100% but the doctors told me to go gluten free and then have the gastroscopy done again in 6 months time. So I feel i have it and they doctors think i do be wont tell me for sure :/

The reason i got tested in the 1st place was because my sister had, i have psoriasis (which is linked?) i struggle to gain weight, i feel tired after eating and bloated my periods are messed up too......

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Hopefully he will change his tune after you've been gluten free for a while and he sees how much better you feel.

I never got an official diagnosis, and my hubby is my biggest supporter. He will speak up at restaurants before I get a chance. And I really don't spend any more on groceries....just eat simply. No processed food, except for my pizza crust mix :P

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If your gluten free for 6 months, your endoscopy biopsies will likely be negative. That's the point of being gluten-free.

Did they do biopsies of your small intestine? The damage is usually not something they can see.

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I do have my DH's support but it did take a bit of time. Thing is, he could see what was happening to me. I had a very bad virus where I couldn't eat, lost weight and it probably took me a year to figure out what had happened to me. During that time he might not have been too supportive, but I was kind of in denial too.

At some point I figured out the gluten thing & cut it out...then it took a bit to do it right (wow is gluten in everything!). I know within 15 minutes if I have eaten something bad for me. I am a miserable person on gluten ! DH knows this - in fact if I'm grumpy, have a headache, stomache, or don't feel good he'll ask me what I've eaten!

The other thing that will help is if you work hard at avoiding it & do it consistently. People at work, for example, don't even question me because I NEVER eat it. How can I, it makes me sick?!

Too many folks use it as a fad diet or have been told to try it & that's not their issue. Two people I work with 'avoid' gluten but still eat pizza at our pizza parties...hmm...

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I have a very supportive man in my life and am thankful everyday he is as supportive as he is. I am sorry your Husband is not very supportive. We have a very low income and struggle for me to have gluten free foods... I have discovered that it isn't as hard as I made it out to be. Fruits and Veggies are naturally gluten free, Meats are naturally gluten free as well. we have started eating anything that is naturally gluten free and slowley based our weekly menus off of that. hope these ideas helps! :)

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To answer your question, I am fortunate to have a best friend of a husband who stuck by me while I was very, very sick and in agonizing bone/muscle/joint/nerve pain. Took me to dozens of doctors in 3 different states in 3 years. Never gave up on me and never once made me feel bad that our life had come to a near stand-still because of my "mysterious" illness. I diagnosed myself after researching my symptoms and then had it confirmed by a stunned PC doctor.

Sweet Hubby thanks me every day for saving my own life and he bakes our bread for us. He went gluten-free with me; totally his decision. I know how lucky I am, believe me!

I can honestly say I am always angered when someone reports a significant other who makes things more difficult than it has to be or who abandons their partner when he/she needs them the most. Talk about kicking someone when they are down. To have him make you feel bad is beyond unkind. If you remain sick because you accommodate him and eat gluteny foods, then what purpose will that serve? Take care of yourself.

To make things easy, I can provide you with the shopping list/meal and snack suggestions I made up for friends and family members who were worried there "wouldn't be enough to eat" if they went gluten-free.

Frankly, we eat mostly plain, whole foods and do not buy much prepared stuff. We make our own bread and pizza dough. But packaged food does come in handy, especially if you have kiddos. There is no need to overspend at the grocery store and still eat well.

Hope it helps you get started anyway.

ARE YOU IN THE US NOW?? I am not sure from your original post.

IF so:

Breakfasts:

Erewhon crispy brown rice cereal or gluten-free Kellogg's RICE KRISPIES, gluten-free CHEX corn or gluten-free CHEX Rice cereal, gluten-free CHEX honey-nut or gluten-free CHEX Cinnamon

Add: rice milk, almond milk or coconut milk and add berries or sliced banana.

CERTIFIED gluten -free oatmeal w/cinnamon (glutenfreeda brand, Bob's Red Mill )

Eggs and bacon or sausage with gluten-free toast or bagel (Kinnikinnick, Udi's or homemade)

Yogurt, fruit and toast with peanut or almond butter.

Cream of buckwheat --it's good!! (no worries--Buckwheat is not from the wheat family)

Amaranth pancakes w/pure maple syrup

gluten-free packaged pancake/waffle mixes (Pamela's brand is good)

FRUITS and VEGGIES—eat plenty of these.

Snack ideas that are safe and handy

Cozy Shack Rice Pudding cups (in the dairy section)

All natural applesauce cups

gluten-free cookies or muffins (Bake them or buy them.)

Pamela's Baking Mix is versatile and good for cookies.

Bagel with cream cheese and jam (Laurie's are the best I have tried) Udi's are not too bad either (frozen section)

Pamela's makes a very good brownie mix too!

Chobani Yogurt

Lundberg rice cakes or sliced apples and celery sticks with natural peanut butter smeared on

Glutino crackers with cheese or peanut butter

BOAR's Head brand pepperoni, salami, all their cold cuts and cheeses

Planter's peanuts, almonds, cashews.

NUTSONLINE also has an entire gluten-free section of flours, nuts, candies.

SUNMAID raisins, prunes. Craisins by Ocean Spray. (some raisins and dried fruits are dusted with flour to keep them from sticking but these brands are safe.)

smoothies- made with coconut milk, fruit, yogurt, etc

Potato chips----like Cape Cod or Kettle Brand or Utz

Indiana Popcorn--comes in all flavors--the kettle corn is delicious

Glutino brand pretzels—they come in all flavors even chocolate -coated

Coconut milk ice cream (Turtle Mountain So Decadent brand is very good)

Ice Cream, if dairy is not a problem for you.

Organic Corn chips w/salsa, hummus, or Wholly Guacamole

Sunflower , pumpkin or flaxseeds

Candy—Hershey's kisses or bars, regular size Reese's cups, Snickers, York peppermint patty, Butterfinger and M &Ms plain and peanut. Ghirardelli squares.

Make some Chex mix with gluten-free chex cereals

gluten-free Rice Krispies treats (recipes are online)

Check the labels of all packaged products-- if they were made with wheat or malt gluten, they will state so on the package.

LUNCH and DINNER:

Leftovers from last night's dinner make an easy lunch

A sandwich with gluten free bread—UDIs and Canyon Bakehouse are good packaged breads, rolls and bagels, but homemade is the way to go. I have a simple recipe for white sandwich bread that is delicious if you want it. Just PM me.

A big salad with tons of veggies and grilled chicken or shrimp and Hard-boiled eggs/ with gluten-free or homemade vinegrette dressing. A list of gluten free salad dressings is available online. Marzettis, and most of WishBone and Ken's are okay.

Homemade vegetable minestrone ,chicken soup, stews, black bean or white bean chili (gluten-free stock)

chicken or bean nachos (can use corn tortillas)

red beans and rice

almost all mexican food is safe (just no flour tortillas!)

pasta and sauce w/meatballs (brown rice or corn pasta TINKYADA BRAND rice pasta is delicious! Cook 13 minutes exactly) and use gluten-free breadcrumbs

meatloaf (beef or ground turkey) baked potato or yams, green veggie of some kind

Other proteins: roasted or grilled chicken, turkey, pork, beef, salmon, talapia, scallops, lamb, some sausages are safe, bacon (Check labels)

Vegetarian chili--homemade.

I eat a variety of veggies..whatever looks fresh at the super market or farmer's market or stands...steamed, grilled--- or roasted root veggies in stock.

Sweet potatoes—baked at 350 degrees in a pan for 45-50 mins.--are yummy

Potatoes—roasted, grilled, whipped with milk

Fritattas with veggies and salad

Stuffed peppers—with ground turkey, beef or lamb and rice

ANY recipe can be altered--just use gluten-free breadcrumbs, or rice pasta ---use any flour made from amaranth, corn, bean, etc...just NO WHEAT, RYE OR BARLEY or cross -contaminated OATS. Quaker oats are likely CCed!!. Bob's Red Mill are not.

Cross-contamination is the bane of our existence. A package stating a product is “Gluten-free “ does not always guarantee it was processed and manufactured and packaged in a dedicated facility. You want the GIG (Gluten Intolerance Group) circle stamped on the package –it is a big gluten-free in a circle.

Some DEDICATED gluten-free facilities are:

Bob's Red Mill

1-2-3 Meredith's Marvelous

Authentic Foods

Pamela's

Cause You're Special

Udi's

The Cravings Place

Andean Dream

Kinnikinnick

Organic Nectars

Orgran

Foods by George

gluten-free FULL FLAVOR Gravy

Prana Bar

Enjoy Life

EnergG

Gillian's

They make all kinds of ready made mixes and flours to make it easy to start baking. I tell my friends who say "I wish I could cook as well as you do"... "Anyone can cook. If you can read a recipe, you can cook." ;)

Hope this helps.

Best wishes!

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If your gluten free for 6 months, your endoscopy biopsies will likely be negative. That's the point of being gluten-free.

Did they do biopsies of your small intestine? The damage is usually not something they can see.

Yeah I know I was kinder of confused, If i'm honest it seemed as if they didn't really know what they where on about, as if i go gluten free surely it wont show again on the endoscopy??

They didn't tell me anything :( I'm an army wife living abroad I don't speak there langauge so that didn't help, but they didn't explain anything to me really, when i went to get my results he spoke very some english, he said nothing about biopsies I didn't think to ask as I didn't know much about it, I got the results 2 days later so maybe he couldn't have as thats kinder quick!!

He took pictures and just said there is some redness or something, but the nurse said this can be caused by lots of things eg stress, smoking and also celiac....she said there is no damage BUT they think I have a high chance of having it and should go gluten free.

I don't understand i'm really confused, I don't no if I should go back through the english doctors and speak to them or this a waste of time?

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Where are you ? There is a possibility that there are members here from that country who can point you in the right direction ..

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If you have a positive blood test then treat it as if you have celiac - seriously- damage in your intestines can be patchy and they say they there is around 20% false negatives in celiacs.

My hubby was supportive - its awful that your hubby is not - it makes a difficult situation even worse. There are some great gluten free blogs about - have a look around for some inspiration. I am not great at baking or anything, so I just use the gluten-free mixes, DH can't even tell the difference!

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Two qustions:

What lalnguage is spoken where you are stationed?

Are there any gluten free pastas or breads in your PX? Or do you have to buy them on the local economy? Did you go to an Army hospital or a local hospital?

:D Okay, I know that's more than two! :)

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Yeah I know I was kinder of confused, If i'm honest it seemed as if they didn't really know what they where on about, as if i go gluten free surely it wont show again on the endoscopy??

They didn't tell me anything :( I'm an army wife living abroad I don't speak there langauge so that didn't help, but they didn't explain anything to me really, when i went to get my results he spoke very some english, he said nothing about biopsies I didn't think to ask as I didn't know much about it, I got the results 2 days later so maybe he couldn't have as thats kinder quick!!

He took pictures and just said there is some redness or something, but the nurse said this can be caused by lots of things eg stress, smoking and also celiac....she said there is no damage BUT they think I have a high chance of having it and should go gluten free.

I don't understand i'm really confused, I don't no if I should go back through the english doctors and speak to them or this a waste of time?

I have run into alot of the same issues. My husband is retired AF and we are stationed at Ramstein, Germany and while we are entitled to base medical I am alot of times refered off base and then you run into the language barrier and it becomes a mess-up in getting your labs back to your doc who can do something about the sitautions.

Do you have access to base medical? If so and not familiar with the system, you really have to keep working to get the care you need. I swear all too many are not qualified, especially when it comes to gluten intolerance and celiac. I could go on and on what I have been thru in the past 9 months.

In order to test for celiac you will have to be on gluten for at least 2 months, some docs say longer. However, testing is not real accurate. How have you done since being off glutens? I went thru such a time with gastro on base that I decided I had enough, could not tolerate glutens long enough to get my testing done so I was just going to go it on my own. However, because I know it is so hard to go up the medical chain to get anything I wanted this documented in my records so I went back in after 12 days back on glutens and I told him I could not do it and I would just remain gluten-free without testing. He then told me that if I went back into their office complaining of the same symptoms they would want to repeat the whole process all over again. Fine. But I had more than just gluten symptoms, I also have neuropathy issues. All I can say is thank goodness my assignd doc deployed as this gave my records a new set of eyes and when my new doc saw everything I was tested for, all my symptoms and the improvement I made on a gluten-free diet he called it and I was diagnosed with celiac.

And yes, the exchange rate stinks right now so to buy anything on the economy is quite expensive. The Commissary does not carry much in te line of gluten-free products so I buy online quite a bit for things I would like. If you are in Germany, I have found Globus to be your best place to buy gluten-free products on the economy. They are in the diet (diat) food section and actually are good. I prefer the Glutano Mix It flour over some of the other flours I have tried.

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Hi so i'm just curious when you first got diagnosed with celiac did your partner support you? I feel it is stressful changing your diet if your like me not very good at cooker anyway. We have just moved country and the food is more expensive here and we struggle finding things to eat, food shopping in the UK was never a problem......i miss it! :(

ANYWAY so food shopping can be a pain here now and my husband is being really unhelpful hes making me feel like i'm such a burden, as i havent had a full diagnoses i have the symptoms its in the family but the doctors can't tell me for sure but they think its likey so they want me to go gluten free............so i just feel it would be easier to put it off after xmas is this okay?

Thanks x

Hi--

I will not be of much help to you as far as shopping as I am new to all of this as well. I do, however feel for you as far as having a unsupportive spouse. I don't know how to "make" them see that we didn't ask for this, it just "is". I already feel like a burden without any comments from him. I don't like the fact that I cannot eat what I used to. I am also thinking about waiting until later to start gluten-free. I know I need to try now ( or keep trying) I just don't want to fight about it. I am tired of the whole thing already and I haven't even started. Most of the reason I feel this way is lack of support. If I could get him to give me some support and positive comments it would sure be easier.

Just know that I am thinking about you I hope your situation gets better.

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Teacher and Lucy, celiac/gluten-intolrance is not a choice we make just like someone who has diabetes does not make the choice to have it either. What we do have a choice about is what we decided to do about it. Just like a diabetic, we can let it go but we're not going to get any better. Infact, if you let this go, it might take awhile but it is likely things will only get worse. I had no idea this was what my problem was and for 2 years I had been going to various docs with symptoms. Unfortunately it went too long unattended and now I am dealing with neuropathy issues. This leads to other things if you let it go so please do what is best for yourselves.

Many of us here have posted about the lack of support from family and spouses. I have been married for 19 years and I honestly think my husband was in bigger denial than myself. He did not follow me to the bathroom, he could not feel what was happening with my stomach. All he knew is that the person I once was and the way I cooked, the way I ate, was changed. It is alot of adjustment for everyone to deal with.

Best to you both! Really, once you make the adjustment and you feel the difference for youself, you will not want to go back to living the way you were.

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Hi--

I will not be of much help to you as far as shopping as I am new to all of this as well. I do, however feel for you as far as having a unsupportive spouse. I don't know how to "make" them see that we didn't ask for this, it just "is". I already feel like a burden without any comments from him. I don't like the fact that I cannot eat what I used to. I am also thinking about waiting until later to start gluten-free. I know I need to try now ( or keep trying) I just don't want to fight about it. I am tired of the whole thing already and I haven't even started. Most of the reason I feel this way is lack of support. If I could get him to give me some support and positive comments it would sure be easier.

Just know that I am thinking about you I hope your situation gets better.

heyteach...see my post above. Maybe it will get you started with shopping and menu ideas. It is not as restrictive and difficult as it seems in the beginning and most foods are the same ones you already eat!

Stop viewing yourself as a "burden", honey---this is not your "fault" and it is not the end of the world, even if it seems like it is right now. No one ask for an autoimmune disease, it just happens. We have the power to keep it in remission by diet.

You can do this and we can help.

Most importantly, your health is the most important thing and you need to come to a place of acceptance so you can feel better and get on with your life. Your husband may come around if you BOTH see that it is a manageable dietary change--one that is saving your life.

Best wishes.

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My husband was a bit unsupportive at first too. And part of it was my own fault. For years I've tried a bunch of different diets to find out what was wrong with me. You see, I knew it was food related, but I couldn't put my finger on it. So he had seen me try all this stuff and give it up after a month or two because it wasn't helping me. But when I started gluten-free, I knew that this lifestyle change is one that would last my whole life, because I felt so much better just a couple of weeks after being gluten-free. I've been on the diet 5 months now, and my husband is starting to come around. He sees me being very careful about what I eat, doing a lot of research, buying gluten free products at the store, being careful when we go out to eat, etc. Lately he's been sweet enough to bring home some Woodchuck Cider for me when he goes out to buy beer. That's his way of showing me he takes it seriously now.

At this point, my husband still eats gluten. I believe it's his choice whether he wants to give it up or not and I'm not going to force him. But I am the one who does the majority of the grocery shopping and almost all of the meal cooking, so I am starting to limit the amount that comes into the house. One thing that has helped him, I think, is that he's not really missing the gluten when I cook. He still gets a tasty (gluten free) meal for dinner and he has his cereal and bread for sandwiches. Since his diet hasn't changed that radically, it's been easier for him to adjust.

You have to realize that this is a big change for him too. It's scary to think of your spouse having a "disease." And I think men get frustrated when they can't do anything to "fix" a problem. He may be frustrated that the can't make you better. It may take him a while to get adjusted. Hang in there. Hopefully he'll come around when he realizes how seriously you're taking this. The change can seem overwhelming to both you and him at first, but after a while you'll quickly know what foods you can and can't eat and it won't be so overwhelming for either of you.

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I think it's pretty normal for a lot of people's partners to be skeptical and take some time to adjust to any kind of change. Have you told him that you feel that you need support in dealing with your diagnosis? Have you told him what specific things he can do to help you feel supported? Have you told him that you've been feeling like a burden? It could be that he just doesn't know how to show his support and needs to be gently guided in the right direction. My partner and I can both need those kinds of reminders sometimes.

However, I think it's really important to look at that support or lack of support in the context of the whole relationship.

First set of questions:

  • Does he take your feelings into consideration on other topics?
  • Is he been generally supportive of your hopes and dreams?
  • When you specifically ask him for help is he usually willing?
  • Does he ask for and listen to your opinion on decisions that affect both of you?
  • Are you able to talk to him about emotional things?
  • Does he sometimes willingly give up what he wants so that you can have what you want, without guilt tripping you about it?
  • Does it bring you comfort to confide in him?

Second set of questions:

  • Do you often find yourself giving up what you want to avoid a conflict?
  • Do you usually find yourself thinking of what he wants before thinking of what matters to you?
  • Do you avoid bringing things up because you are afraid of what his reaction will be?

If you got mostly "no" answers to the first set, and mostly "yes" answers to the second set of questions there may be a bigger problem to deal with.

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And I think men get frustrated when they can't do anything to "fix" a problem. He may be frustrated that the can't make you better. It may take him a while to get adjusted.

This is so very true. My husband watched helplessly while I deteriorated, at one point saying to one doctor, "I just want my wife back." I felt my heart break. :( He had to help me get dressed when I was so bad and he held my head while I was ill, applying cool compresses so I would not pass out in the bathroom. He made me water/salt/sugar drinks to keep my electrolytes balanced (he's a chemist:) and on and on and on...without him, I might have given up.

He embraced the gluten free diet with me because it saved my life and he worried about CC. I did not ask. He just did it.

We lived in hell for nearly 4 years.... and now, he has his wife back :)

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Irish and I are married to brothers. Well, not really, but my husband has had to come home from work many times to walk me to the bathroom (this is chronic pain stuff, not just celiac stuff). He had to work 100-hour weeks (the nature of the work), come home, cook, clean, etc. for three years. I cannot recall his ever complaining about it. Now I manage and cope far better with my pain so I do what I need to do and cook at least 6 days a week. Anyway, pain is no longer my focus. We are also hiring a housekeeper.

Our home is 100% gluten free. My husband eats gluten foods at work the odd time (he usually takes yummy dinner leftovers from home) and at work functions. He wanted to go gluten free at home to support me and make things far easier for me. And I adore him for it. He is incredibly careful and knows just as much about celiac as I do. Thankfully he is a good listener as I fill him in on Celiac.com regularly. :D

When I was diagnosed with celiac and also fibromyalgia this year my precious husband held me close, listened while I cried/talked for hours and kept asking if there was anything he could do to help. He would surprise me with Amazon book orders or a new cooking ingredient - things just to make life a little easier. He makes me feel important and special and needed. It is crucial to feel needed. I do what I can - what gets done does; what doesn't, doesn't. That is how it is.

When we eat out he is on the phone with the chef, discussing cross contamination and so on. It is very sweet and kind. Thankfully most high-end restaurants get it and they are such a treat. My husband constantly tells me and makes me feel as though I deserve it. He spoils me but I spoil him back! :P

Like Irish said of her gem of a husband, my husband just wanted me back. Well, here I am! :D

Perhaps things will improve for you as this becomes routine and part of daily life. It is possible! :P

Edited by love2travel
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Hubs had to restrain himself on more than one occasion from doing bodily harm to insensitive, arrogant doctors .... :rolleyes:

He is also our grocery shopper and READS LABELS like a pro. I taught him. He reads every damn article I show him and like LOVE2TRAVEL's man, he knows what goes on here on celiac.com. :) His bread recipe has made the rounds.

Anyone's partner who takes the time to learn about celiac will be more supportive as you go along.

You guys are in this TOGETHER.

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My husband has been extremely supportive especially since he saw how sick I and our youngest was. He also saw the improvement in our oldest. At this point he is also gluten free...it started with him doing it at home to be supportive, but he found he feels better.

Even now though I have anxiety about going out so he does all the food shopping for me and he cooks for me when I am just too tired or upset. He has been a rock through all of this and is extremely helpful.

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Hi Sorry about your struggle. I was in a similar situation where we did not have the 100% YES you have celiac diagnosis. Luckily, my husband was supportive none the less and often believes it more than I sometimes do....

I also have to family history, and symptoms, but inconclusive blood tests.

Do some research on the internet about false-negatives results, clinical trials (if you stop eating it and get better, there's your answer.)

It's too bad that he's not more supportive on his own, but work at it. Prove it to him! And I say don't wait to go gluten-free. Everyday you keep eating you're losing a day towards your full recovery!

Good luck!

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As long as you aren't about to take more tests, I think you should go gluten free asap and tell your hubby to deal with it. You want to feel better, right? But, I have heard that if you go gluten free before being completely diagnosed with it, it can cause the test to become negative. But I know how you feel. I feel like no matter what anyone says, no one around me really takes this disease seriously b/c it has become such a buzz word now. If you were diabetic, would he not support a diabetic diet for you?

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    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
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