Partner May Have Celiacs, Need Advice

[zoso66]

Hi!

 

So I am in a situation that I'm sure others have found themselves in and am in great need of some advice and guidance. So my girlfriend has been exhibiting symptoms that seem to be extremely indicative of a gluten intolerance but she was just recently diagnosed with chronic fatigue syndrome by her doctor. The symptoms are so similar and I have been reading a lot of things that suggest the two disorders are linked or even that celiacs is often misdiagnosed as CFS. These are her symptoms: chronic fatigue, exercise intolerance (mostly cardio), insomnia, some digestive issues (stomach cramps, blood in stool), severe anxiety, depression, irritability, mood swings, headaches, chronic flu like symptoms, sore throat, lactose sensitivity, random case of hives, tingling in her feet, severe muscle aches in back, joint pain, hot flashes, sound sensitivity, cold feet, abnormal periods (she is on bc to control them). She also has a family history of MS and Fibromyalgia. While testing for CFS the doctor did a blood test for the transglutiminase and it was negative. But I know that these tests can be misleading or inaccurate.

 

It is seriously affecting her quality of life, and our relationship. I want to help and I feel so lost because I can't make her better. It hurts me to see her struggling and suffering so much every day. She has some days that are better, but for the most part she is struggling to get out of bed in the morning and has to drink lots of caffiene to make it through the day and then she is too tired to do much when she gets home so she usually takes a nap for 3-4 hours. Because of the extreme fatigue and exhaustion/frustration from having to deal with all of these symptoms she becomes very irritable with me quickly. I have been researching like mad to find ways to help her. The doctors aren't of much help, they only prescribe her meds to help her sleep and something for nausea. While doing research I began to read more and more about how her symptoms could be celiacs or gluten intolerance and I tried to suggest that she try to go gluten free for a while to see if it helps and she became very angry with me and thought I was acting like it wasn't a big deal and that I didn't understand how hard it would be to do that. This made me extremely sad because I care so incredibly much and love her so I would never intentionally downplay something like that. This was before she was diagnosed with CFS, and after she was diagnosed and the meds weren't doing much I tried suggesting the gluten free idea again, I even offered to do it with her 100%, and told her that I supported her no matter what she decided to do. But she just ignored this. So, the bottom line is that she does not want to do the gluten free diet, which I completely understand. Nobody would want that. But I'm so worried about her health, and her happiness that I just want to do anything to help. I know if it was me and I knew gluten could be an issue I would immediately get rid of all the gluten in our house and start looking up recipes. I know she has a different mentality than this though.

 

I don't know what to do. Her symptoms seem to be getting worse and worse. And I feel like she is at the end of the line as far as what doctors can tell her, so eliminating gluten and seeing if it works seems to be the best plan to getting her well right now. But how do I approach this sensitively? Any input on others who are suffering from gluten problems who could give me some insight on how she is feeling or how to talk to her about it? Do her symptoms seem like they could indicate celiacs/gluten insensitvity? So sorry for this long post, I'm just really seriously worried about her and want to do everything I can to help but everything I've done so far just seems to make things worse. Thanks so much!

[notme]

can her doc not test her for celiac?  that does sound like many symptoms that could be caused by gluten.  in order for the test to be accurate, she must continue to eat gluten until after the test anyways.

 

as far as her denial of it:  oh, yeah, i can relate~!  gluten almost killed me (and i suffered for years, not knowing what was wrong with my stupid body) but when they told me i might have celiac, i didn't tell ANYBODY (and i didn't quit gluten right away) i didn't tell my husband, even!   it took a few months (and getting continually worse) to wrap my head around the diet.  even then, it's frustrating and difficult to eat completely gluten free.  the thing that convinced me (other than not being able to keep food 'in') was the almost immediate improvements to my digestion.  if i ate things containing gluten, i was violently ill.  if i ate gluten-free things, i still had trouble digesting them, but i didn't throw up immediately. 

 

annnnd - last but not least - if you have a gluten problem, it tends to make you cranky a total b*+ch   

 

good luck!  and welcome to the forum.

[zoso66]

can her doc not test her for celiac?  that does sound like many symptoms that could be caused by gluten.  in order for the test to be accurate, she must continue to eat gluten until after the test anyways.

 

as far as her denial of it:  oh, yeah, i can relate~!  gluten almost killed me (and i suffered for years, not knowing what was wrong with my stupid body) but when they told me i might have celiac, i didn't tell ANYBODY (and i didn't quit gluten right away) i didn't tell my husband, even!   it took a few months (and getting continually worse) to wrap my head around the diet.  even then, it's frustrating and difficult to eat completely gluten free.  the thing that convinced me (other than not being able to keep food 'in') was the almost immediate improvements to my digestion.  if i ate things containing gluten, i was violently ill.  if i ate gluten-free things, i still had trouble digesting them, but i didn't throw up immediately. 

 

annnnd - last but not least - if you have a gluten problem, it tends to make you cranky a total b*+ch 

 

good luck!  and welcome to the forum.

Thanks so much for your reply!

 

In a round of initial blood tests to find out what was wrong with her they did one test for gluten antibodies, but it came back negative. I keep reading that those tests aren't reliable and that the only way to know for sure is to eliminate gluten and see how you feel. But I think she may be using the fact that the one blood test was negative to justify not believing me about the gluten issue. I don't know that for sure, but it seems that way.

 

I'm glad you can relate with the denial thing. I'm not sure that she is completely in denial, just very very resistant. Which I understand, she's gone through a lot in life and I know that the idea of having to go on a very restrictive diet is really depressing and that she just wants to feel normal. I mean, I get that. I just can't help but have constant anxiety about her health and how to help her when she doesn't want to listen to me. Once you came to terms with it yourself and told your husband was he supportive? And what things did he do, or not do, that helped you cope with the diagnosis? I know I cant just step in and say "you have this diease, you have to have this diet now, blah blah blah", I know she has to come to the realization herself and want to help herself before I can help. It just seems like a time sensitive thing. Her symptoms keep getting worse, so I fear that if it is gluten and she doesn't change her diet soon that the damge done to her body will be harder to heal.

[pricklypear1971]

You've heard the saying "You can lead a horse to water but you can't make him drink."

Yeah.

I would ask her if she's willing to undergo blood testing again. If yes, get her in there ASAP with a complete list if tests. If no, there is one thing you can do that may or may not end your relationship..... It is a well known fact that if a gluten sensitive goes off gluten and them ingests it, s/he may have a stronger (if not violent) reaction. And THAT may be proof to her that there's hope.

To "fool her into gluten-free" you've got to take all the gluten out of the house, decontaminate the house, and somehow con her into eating gluten-free (you pack 'em) at work. And then, cross your fingers she's a fast and violent reactor. Read the "newbie 101" thread in this forum.

What i just described is a long shot, but I wouldn't be above it.

Also, I'd add that she may be trying to process the news she received...and this is how she's dealing with it. She may be alternatingly angry and depressed...and it may get aimed at you. She may view your suggestion of celiac/ncgs as "another thing that's wrong with me", not a solution.

And another thing. DO NOT DISPARAGE THE gluten-free LIFESTYLE IN FRONT OF HER. If you want her to try it, you'd better act like a parent demonstrating a new yummy, wonderful thing to a kid. One thing most of is fear is limitations - going out, travel. You may research gluten-free restaurants in your area and take her to eat there. Make it seem easy.

[zoso66]

Thanks for your reply PricklyPear, I have suggested that she just try it for a couple of weeks and then reintroduce it to see how it affects her, but she doesn't seem very willing and gets really irritated when I suggest it. Tricking her into going gluten free would be an absolute disaster. I would never do that, because then I know she would never trust me. I want her to figure this out for herself and come to the conclusion that this diet would be a good idea on her own. I just wish there were ways I could lead her in that direction or make suggestions without upsetting her. I know she is under a lot of pressure from work and is really stressed out as it is, I don't want to add to her stress, but I want to help her get healthy.

[bartfull]

If you point out to her that there are TONS of gluten-free foods that are delicious, and that if she does have celiac or NCGI that she can doctor HERSELF with a simple diet change rather than medications (and all their side effects) or surgery, and start feeling really really good again, maybe she wouldn consider it?

 

Buy her some Udi's Double Chocolate Muffins (at your local health food store). They are unbelievably good. And you might even try Canyon Bakehouse seven grain bread. It's yummy. Pamela's makes a great flour for pancakes.

 

Now it IS better at first to stick to whole foods instead of gluten-free substitutes, but if she becomes aware that there are good substitutes for most things, maybe she won't be so unwilling to try it. Then after she has started healing on whole foods, she can satisfy her yen for just about anything she wants.

[zoso66]

If you point out to her that there are TONS of gluten-free foods that are delicious, and that if she does have celiac or NCGI that she can doctor HERSELF with a simple diet change rather than medications (and all their side effects) or surgery, and start feeling really really good again, maybe she wouldn consider it?

 

Buy her some Udi's Double Chocolate Muffins (at your local health food store). They are unbelievably good. And you might even try Canyon Bakehouse seven grain bread. It's yummy. Pamela's makes a great flour for pancakes.

 

Now it IS better at first to stick to whole foods instead of gluten-free substitutes, but if she becomes aware that there are good substitutes for most things, maybe she won't be so unwilling to try it. Then after she has started healing on whole foods, she can satisfy her yen for just about anything she wants.

Thank you! I did try to have this conversation when I first suggested the diet but I think she took it as me thinking it wasn't a big deal or trying to downplay how much it would affect her life. Which I wasn't at all. I know it is serious, and would be a huge adjustment, but at the same time I'm not going to be pessimimstic about it. And I think my optimism is often misinterpreted as me not taking something seriously, or not understanding how she feels. So simply trying to tell her that a gluten free diet doesn't have to be completely miserable and that there are lots of good products out there doesn't seem to be effective. Maybe I just need to be patient and see if she starts mentioning anything about it on her own, or just try to suggest it again. I'm just terrified that by continually suggesting this idea and her not being receptive that it will just cause her to resent me and make her even more resistant to the idea. Just feeling pretty discouraged. Thanks for the input. And if anyone has stories of how their partner or spouse has supported them or how they have dealt with this disease and relationships that would be extremely helpful.

[zoso66]

You've heard the saying "You can lead a horse to water but you can't make him drink."

Yeah.

I would ask her if she's willing to undergo blood testing again. If yes, get her in there ASAP with a complete list if tests. If no, there is one thing you can do that may or may not end your relationship..... It is a well known fact that if a gluten sensitive goes off gluten and them ingests it, s/he may have a stronger (if not violent) reaction. And THAT may be proof to her that there's hope.

To "fool her into gluten-free" you've got to take all the gluten out of the house, decontaminate the house, and somehow con her into eating gluten-free (you pack 'em) at work. And then, cross your fingers she's a fast and violent reactor. Read the "newbie 101" thread in this forum.

What i just described is a long shot, but I wouldn't be above it.

Also, I'd add that she may be trying to process the news she received...and this is how she's dealing with it. She may be alternatingly angry and depressed...and it may get aimed at you. She may view your suggestion of celiac/ncgs as "another thing that's wrong with me", not a solution.

And another thing. DO NOT DISPARAGE THE gluten-free LIFESTYLE IN FRONT OF HER. If you want her to try it, you'd better act like a parent demonstrating a new yummy, wonderful thing to a kid. One thing most of is fear is limitations - going out, travel. You may research gluten-free restaurants in your area and take her to eat there. Make it seem easy.

Thanks! I definitely can see that this whole situation is causing her a lot of anger and depression which gets targeted at me mostly because I'm the one who is around the most and also because I seem to add to her stress by trying to help. I struggle with this, because I have always been a "fixer". It just seems so obvious to me that trying to go gluten free would be a good idea, so it is hard for me to sit back and not suggest. But I know that isn't always helpful and she may see that as me adding to her stress or adding to the things that may be wrong with her. Also, I have never talked down the gluten free lifestyle around her, mainly because I have a friend who has celiacs and we have even discussed that before, in an unrealted situation, and I expressed that it must be hard but that I would do it if it meant feeling better, at the time she seemed to agree. But I think now that the situation is personal, it seems less doable. I don't know. Thanks for the advice!

[bartfull]

Guys tend to be "fixers". Women tend to be "listeners". There's a lot of strife over that for all of us. A woman usually talks about her problems just to have someone tell her they understand. We aren't looking for a fix, just a hug.

 

And of course if we can GET a guy to tell us about HIS problems, he usually thinks "What's the use? All she wants to do is give me a hug instead of trying to fix it."

 

It's a Mars - Venus thing. Makes life hard for us all sometimes, but interesting.

[notme]

Thanks so much for your reply!

 

In a round of initial blood tests to find out what was wrong with her they did one test for gluten antibodies, but it came back negative. I keep reading that those tests aren't reliable and that the only way to know for sure is to eliminate gluten and see how you feel. But I think she may be using the fact that the one blood test was negative to justify not believing me about the gluten issue. I don't know that for sure, but it seems that way.

 

I'm glad you can relate with the denial thing. I'm not sure that she is completely in denial, just very very resistant. Which I understand, she's gone through a lot in life and I know that the idea of having to go on a very restrictive diet is really depressing and that she just wants to feel normal. I mean, I get that. I just can't help but have constant anxiety about her health and how to help her when she doesn't want to listen to me. Once you came to terms with it yourself and told your husband was he supportive? And what things did he do, or not do, that helped you cope with the diagnosis? I know I cant just step in and say "you have this diease, you have to have this diet now, blah blah blah", I know she has to come to the realization herself and want to help herself before I can help. It just seems like a time sensitive thing. Her symptoms keep getting worse, so I fear that if it is gluten and she doesn't change her diet soon that the damge done to her body will be harder to heal.

unfortunately, we hear this so much on here - people get tested, get a negative, and go on to the next disease....  sometimes they are given the wrong test, sometimes the doctor reads it wrong, sometimes it's borderline but within the parameters of 'normal' - my own blood test was negative (but i was already off gluten) but i was diagnosed via endoscopy.  some people are even non celiac gluten intolerant (ncgi) <the symptoms are so similar and the treatment is the same:  get off gluten.

 

lolz - my husband's reaction was the reason i didn't tell him right away.  he watched my health deteriorate over a long period of time.  i had been to doctor after doctor plus my immune system was shot, so i caught every virus or cold i came in contact with, followed by mega-doses of antibiotics <which kill even the good digestive 'bugs' in your gut.  so, i knew he would be MAD at me if i didn't at least *try* the diet!   he was all aboard from day one.  he eats mostly gluten free and our kitchen is mostly gluten free.  he is very careful and goes the extra mile to make sure i eat safely.   he has watched my health improve and i am still putting on weight. 

 

so much in denial was i, that i made my screen name 'notme!' lolz who has celiac?  not me! 

 

cook her a dinner that is plain (chicken, fish, whatever) if you want gravy, make it with corn starch instead of flour.  make carrots and mashed potatoes.  viola!  gluten free dinner.  tasty    don't tell her til after she enjoys it 

[zoso66]

Thanks! It is becoming very frustrating for me to know that she isn't willing to at least try the diet, especially since it seems like such an obvious answer. I'm trying to be patient and realize that her reaction is much more complicated than her being stubborn and that she is experiencing a roller coaster of emotions as well. Hopefully I can approach the conversation again soon from a different angle. Thanks for the suggestions everyone! And I may try buying a few gluten free products and cooking her a meal to show her it can be good.

[pricklypear1971]

I'm a fixer. My husband was very, infinitely patient and never complained about a gluten-free house. Though, he has said "no thanks" to some gluten-free bread and odd concoctions. I don't blame him.

That said, I was the proactive one....

You know how to relate to her, figure out how to cue in on what she'll listen to. Perhaps if she reads stories from other people dxed with her conditions, and if gluten-free helped???

[w8in4dave]

Maby you can ask her to do it for you!! Just try it for 1 month just for you! If she doesn't feel any different then call it a wash. But I bet in a month she would feel better. You are so sweet to be so supportive and trying your best to help her. It is up to her. And if she is unwilling to try then there is nothing really you can do. If only you knew someone eles that has Celiac that she could talk to.