Celiac Disease Putting A Strain On Marriage And Life

[tsomo]

I want to go to a retreat with other Celiacs where I can talk about this disease for a week. I feel like no one knows what I go through. My husband is very accomodating and patient but Im worried because of the strain it puts on our relationship. I almost always have symptoms and so our sex life practically went out the window years ago. Celiac Disease is so hard to deal with I never knew it would be so hard. I though I would just get better. But I get contamination every month and it takes me a month to recover so I am almost NEVER feeling good.

Last time I wasnt bloated? Hmm, May 24.

I'm so tired of wearing bloated clothes. I have a closet of clothes I cant wear and I have to wear baggy sweat pants because of my distended belly. Should I burn my clothes and go shopping for plus size pants and get it over with? Im tall and skinny but my belly is so distended I look like a starving Ethiopian. It looks so unnatural.

My coping skills aren't that great. The longer it goes without having a lapse in my symptoms the more irritable and forlorn I become. Im over two months without a day of health and its starting to make me feel batty. Add to that insensitive comments from a family member and Im heading for the wine closet

Tsomo.......just another day in the life of a Celiac

[eKatherine]

Are you gluten-free?

[tarnalberry]

First, it sounds like your husband is being supportive, so I wouldn't worry about your marriage just yet - don't worry about problems that aren't really there.

Second, the diet can be tricky to manage if you don't know the details. Are you certain you know how to avoid contamination? If you're getting sick that often, have you stopped eating out for the time being? Have you investigated other food intolerances? Have you investigated other medical issues?

Third, on the sex life front, there are a number of things that can cause problems there, as it relates to medical issues, and the best support for that is to do what you can around it. Sometimes, that means talking about the problem, so your husband knows you still desire him. Sometimes, that means finding alternative ways of being intimate. And sometimes, you get help from a sex therapist who can help you work through the more challenging problems. (I've been there myself.)

Keep talking with your husband, let him know your concerns, and let him help you solve them. It *can* get better. (And there's a great group of people here who can help with the diet!)

[Phila]

Ok...so I know you may be tired of hearing this, but are you 100% gluten-free? You should also look into possible secondary allergies, such as dairy products, eggs, nightshades, other grains etc.

I had to respond to your post b/c prior to going gluten-free and DF, I had NO desire for sex. Zero...zip.....nada. Sex drive came back with a vengeance after going gluten-free and so did my menstrual cycle, however over the last 2 months I've started feeling worn-out again and I skipped a menstrual cycle (still better than prior to going gluten-free...I didn't get any periods then). Now I'm not sure if I could possibly be getting gluten somewhere, but I am going to re-evaluate my diet. I'm worried that potatoes may be a culprit, but I hope not. I also have high prolactin levels, which I know can complicate things. (Did you know that high prolactin is associated with greater villous atrophy in celiacs?).

I am fascinated with the connection b/w gluten, hormones, the brain and things such as the menstrual cycle. Information on this is scant, so if anyone would like to explain the link please feel free!

Oh...I should add that I'm having an MRI to look at the pituitary gland (due to high prolactin...doc suspects tumour). It will be Sept 12 and I will keep all of you posted. I know some of you are also interested in link b/w celiac and the brain.

[Phila]

Here's a really good link. At one point references relationship b/w celiac and hormones....also brain. If I am not allowed to post links, pls let me know.

ty

Open Original Shared Link

[mouse]

tsomo. I am wondering if you are not getting cross contamination on a regular basis. You should not still be having bloating all the time unless gluten is getting into your diet. I should mention that dairy would also give you the same symptoms if dairy is a problem for you. May I suggest that you go through all of your kitchen and figure out where the contamination could be coming from. Do, you have your own separate toaster for your gluten-free bread. Do, you cook a gluten-free dinner for your family or do you prepare two meals? Do, you have regular flours in the home that you bake with. Flour stays in the air about 24 hours. Are you using gluten-free shampoos as shampoos can get in your mouth. How is your lipstick, toothpaste, etc. You probably already are doing these, but I thought I would mention them just in case. Since your husband is supportive, maybe quality time spent with your hubby might be more productive then a week at a convention. Do you have a support group near you. Also, getting glutened can cause depression, brain fog and not being able to cope among other problems. I wish you well and hope you find out where the gluten is coming from.

[Guest BERNESES]

Hey tsomo- it's definitely tough. how long have you been gluten-free? It DOES get better but there are always rough patches with any chronic medical issue and any marriage. My hubby is really supportive too, but it's still strains a relationship. hang in there, lots of us know where you are coming from. Hugs, Beverly

[Rikki Tikki]

Welcome Tsomo:

I would just add that you might want to check to be sure you are gluten-free and then I was wondering if you should go back to the doctor and have your blood work done? If you are gluten-free then the celiac panel should be negative? I could be wrong. Have you had your vitamin level's checked? Also there is something called refactory sprue. It has taken me about 3 years to feel really good, hang in there we are here for you

[Guest nini]

there are so many hidden glutens and chances for cross contamination, that it may be wise for you to simplify your diet for a while and don't eat out until you have better control of this.

One of the trickiest hidden glutens is in spices, flavorings, and seasonings... for example the taco meat at Taco Bell is NOT gluten-free. It contains wheat. Certain brands of types of foods are not ok while others are perfectly fine.

It sounds like you are still getting a significant amt. of hidden gluten in your diet and it only takes a molecule to cause symptoms, so yes, you have to be that careful. When in doubt don't eat it.

All the issues you describe sound like ongoing glutening. I think eliminating dairy for a while until you heal may also be a good idea.

[gfp]

I'm replying to this because others have pm'd me to say my comments were helpful.

However compared to some of them you are in a great position .. honestly.

First off you have recognised this problem BEFORE it becomes too destructive.

I really can't overstress how valuable that is....

Second, if you are being CC'd one a month then you need to change something.

You don't say how/where....

If its work then think about changes... ultimately your marriage or your job is the worst case scenario but I doubt it would come to that.

If its hubby taking you to resto's then he needs to stop it. You seem pretty open so lay it out for him straight.

You sound like your missing the intimacy .. which is already 10x better than you don't care.

I recommend a 100% gluten-free kitchen, no cheating .. hubby is not allowed gluten snacks (not kids nor pets) and no eating food prepared outside.

Start off eating only home prepared fresh food. If hubby wants to take you out then he can help you prepare food, tidy and light the candles. If he's useless send him off to the mall to buy some nice scented candles or flowers...

I honestly think you are in a much better position than many...you have set your priorities and you think your sex life is suffering. Your hubby needs to do anything and everything to stop you getting contaminated and given your aims should be pretty much enthusiastic about helping you.

As others have said look for other possible problems, soy and dairy seem so common in celiacs .....

Once you have gone 3 months really gluten-free you will identify exactly where and when soi long as you introduce foods and places one at a time and you already recognised that the month just isn't enough time to recover when its every month.

If you are taking the pill it might be worth considering changing the pill. Perhaps the bloating may be partially from this? Personally as a guy I'd say speak to wither a woman Dr. or care nurse ... there are good male Dr's on this but its a lottery and you are far more likely to find a women Dr. who will look through all your options and not just say "heck take it or leave it".

[tsomo]

Thank you ALL for your replies. I avoided reading the responses for awhile because I was so embarassed by the state of my condition its painful to acknowledge it.

I think you are all right in that I am still being glutenated. Youre right, I shouldnt be bloated all the time.

I thought I was being really careful. I dont eat out, but clearly I am missing something.

I wonder if I have the discipline to really get to the bottom of it.

Im going to go back to unadulterated meat and vegetables for two weeks. (and red wine and fruit)

There is no other alternative.

Tsomo

[gfp]

Thank you ALL for your replies. I avoided reading the responses for awhile because I was so embarassed by the state of my condition its painful to acknowledge it.

May I suggest doing a search on this forum.....

You have nothing to be embarassed about anyway but there are people here much much worse than you ...

I would point you to them but that's really not very nice for the people who have the problems!

I think you are all right in that I am still being glutenated. Youre right, I shouldnt be bloated all the time.

I thought I was being really careful. I dont eat out, but clearly I am missing something.

I wonder if I have the discipline to really get to the bottom of it.

Im going to go back to unadulterated meat and vegetables for two weeks. (and red wine and fruit)

There is no other alternative.

Tsomo

You know your answers....

why not bring hubby on board (literally as in here).... I for one could do with a bit of male company!

You are not alone! Indeed its looking increasingly like this is pretty common.

I'd go a bit longer than 2 weeks.... but then gradually add things back one at once.

[Fiddle-Faddle]

Sorry if this is repeating what others have already said, but are you sure you have eliminated:

hot chocolate mix

some milkshakes

french fries at restaurants (diped in seasoned flour before frying)

soy sauce (except for La Choy brand and San-J brand)

Teriyaki sauce (most but not all brands)

hoisin sauce

Rice Krispies

Corn FLakes

sauce or salad dressing seasoning mixes

salad dressings that are thickened with wheat starch or modified food starch(most of them)

"light" ice cream?

All of the above (plus a multitude of others) contain gluten, and it took me quite a long time to figure out that they did. Also, many celiacs react to regular oatmeal, and many instant pre-sweetened oatmeal (the single serve packets) contain--wheat starch!

Also--if you are avoiding dairy (which might be a good idea at least temporarily), be aware that Rice Dream is processed with barley enzymes (a gluten source).

I hope things improve quickly for you. I know how the bloated belly thing goes, I've been threre (and occasionally revisit by mistake)!

[jlinc]

GFP, I think it's pretty interesting that there are so few guys on here. But I for one want to get to the bottom of all this celiac stuff.

I'm celiac and my wife is vegan due to a recent brush with cancer (she's 34!). So she cooks two meals every night, and makes sure they don't cross-contaminate. I don't know how she does it, she's just amazing. It helps that I'm dairy-free now, too.

Tsomo, it took me two years to get gluten-free. I suffered particularly from brain-fog. Really, it was at the level of chronic depression.

It is possible that you are suffering from brain-fog or other mental/emotional effects of peptides. I always felt very hopeless about things when I'd been glutened. Open Original Shared Link

Keep at it, Tsomo. It takes a long time. This disease is very complicated. you'll get there, I promise.

Josh.

[missusg]

I want to go to a retreat with other Celiacs where I can talk about this disease for a week. I feel like no one knows what I go through. My husband is very accomodating and patient but Im worried because of the strain it puts on our relationship. I almost always have symptoms and so our sex life practically went out the window years ago. Celiac Disease is so hard to deal with I never knew it would be so hard. I though I would just get better. But I get contamination every month and it takes me a month to recover so I am almost NEVER feeling good.

Last time I wasnt bloated? Hmm, May 24.

I'm so tired of wearing bloated clothes. I have a closet of clothes I cant wear and I have to wear baggy sweat pants because of my distended belly. Should I burn my clothes and go shopping for plus size pants and get it over with? Im tall and skinny but my belly is so distended I look like a starving Ethiopian. It looks so unnatural.

My coping skills aren't that great. The longer it goes without having a lapse in my symptoms the more irritable and forlorn I become. Im over two months without a day of health and its starting to make me feel batty. Add to that insensitive comments from a family member and Im heading for the wine closet

Tsomo.......just another day in the life of a Celiac

Have you thougth about perhaps you are being cross contaminated by your husband..if he drinks beer for instance and kisses you then you are being contaminated or eating gluten products such as bread..... just a thougth

[Guest ~jules~]

I'm sorry your having a hard time...I can relate. When I was at my worse points with this disease, my marriage deffinetly was not up to par. One of my major problems is irritablility, so you can only imagine some of the hard times around here. Now that I have recently been diagnosed my husband has regret for some of the bad times we had. Are you sure your gluten free? I am very new to this, but in just 2 weeks I can already see the differences in the big "D" , energy, irritablility, and appetite. I still have joint pain, muscle aches, headaches, and eye aching though. I hope that you start to feel better soon, re-evaluate what you are ingesting, and the products you are using. Listen to the experienced celiacs in this group, and if you ever have any doubts or questions feel free to ask, thats why were here!!! Hang in there julie

[munchkinette]

I almost always have symptoms and so our sex life practically went out the window years ago.

For the last few months I've also had zero interest in sex. I've been extremely tired all the time. Someone on this forum suggested I was still getting glutened. I've been very strict for the last week and already I have energy again. I got rid of my shampoos and stuff. I must have been getting glutened.

[daffadilly]

I'm celiac and my wife is vegan due to a recent brush with cancer (she's 34!). So she cooks two meals every night, and makes sure they don't cross-contaminate. I don't know how she does it, she's just amazing. It helps that I'm dairy-free now, too.

Josh.

Josh, I hope you can convince your wife to also go gluten free. Has she had her genes checked? I like Enterolab.com because they also test for the DQ1 genes, a real baddie. I think almost all people with cancer should be on this gluten-free diet. Especially if they have the genes & cancer. I see that in my family & others that i know that have DQ1 the cancer comes first before other symptoms become crippling. M.D. Anderson (cancer hospital in Houston) has a celiac specialist M.D. on staff.

It seems to me, although I do not know that many celiacs personally that have DQ2 or DQ8, that they seem to get all these other auto immune illnesses and complicated celiac symptoms and not cancer right off the bat. I do not know if M D Anderson has any studies to this effect but I think it would be very interesting to do a gene test on a huge cancer population to see what the results were in regards to DQ1, DQ3, DQ2 & DQ8, & I think there is another gene, that I keep forgetting, & there is documented proof that there is at least one or two other unidentified genes in biopsy celiac proven individuals, because they had none of the known genes.

[CarlaB]

I have two DQ1 genes, and I have had symptoms all my life. I did not find out till I was 43, however.