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littleone

I Dont Have Celiac, But Its Ruining My Life!

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Hi all,

Im writing this from a very sad place right now! My partner has suffered from an illness that has gradually become worse (much worse) over the past twelve months. He has lost a hell of a lot of weight, sleeps alot, has pain and uncomfortableness in his stomach. He has always had bouts of illness but this is the longest.

He has been tested for many many things all of which come back negative. I believe I have been supportive of him all the way through (just by being there if he wanted, making sure he is ok etc etc). All though the last twele months have been hard they are nothing compared to the last three months, in that time I have watched my partner become totally consumed and obsessed by his illness.

We were sure he had celiac but again his tests came back negative.

When the results did come back negative I broke down, how can you fight something when you dont know what it is for sure but it is having a very real affect on your life! I have sobbed un controllably, and a couple of days ago expressed my feelings of lonliness, confusion and sometimes anger at the fact that my partner is no longer who he was, i feel as though i am grieving because nothing is as it was. We are only 25 years old.

My partner has joined organisations such as this and similar and found people in similar situations with similar fustrations and in some cases a few answers.

However after my first breakdown since all this began he decided that he can not deal with my feelings and we need time apart. His reasoning behind this is that - my feelings make him feel guilty, he can not put any effort in to making me feel any better about things or offer me any kind of re-assurance because HE is ill, if i cant cope with his illness then how is he supposed to be able to?, he needs more support from me! All of which are his exact words!

We have been together 4 years, we have a great relationship and cant believe that at my first sign of weekness he leaves? Im at a loss I can not loose the love of my life this way! He finds help, comfort and support from sites like this. But just because I am not ill, do i not need support? Just because its not happening to me am I not allowed to feel anything. I could cry a river right now!

Anybody any suggestions (or am I incredibly selfish!)

Thanks littleone

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Celiac.com Sponsor (A8):

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Sorry to hear you are going through this. It is really hard to have aloved one sick and getting sicker and nothing you can do to help. I think a lot of partners and spouses feel similar to you - very frustrated that the other half is sick, but not diagnosable. This disease can really be hard until you get a diagnosis. Has your partner had the blood work and biopsy done for celiacs? Has he tried EnteroLabs? Sometimes they are able to find signs of Celiacs that are missed on the other tests. Sometimes they find other food intolerances that are giving significant problems.

Maybe some time apart will help both of you get perspective and take a hard look to see what you both want? Again, sorry you are going through this. I know it is really hard for both of you. Best of luck to you and your partner.

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It's very hard to see a loved one ill, especially if there's no clear diagnosis.

Basically, one of you is ill, and the other one is worried sick. You BOTH need support!

I think what would help is finding some outside support for both of you, because right now you don't either of you have enough to give each other. It doesn't mean that you don't love each other it's just all too much right now. The way a relationship works is both partners give to each other and get new energy from each other, but a chronic illness sucks away at that energy and so first the sick one doesn't have so much to give and then slowly the healthy one doesn't either because they are not getting anything back from the sick one, see what I mean? So for now you both need some support from the outside.

Don't make any drastic decisions at this point!

Has he tried the gluten free diet yet? Sometimes people have negative test results but improve on the diet. If he's had all the testing it's worth a try.

Hugs!

Pauliina

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Tell him that your frustration is because of what you are BOTH going through. You do not blame it on him, but are frustrated, much as he is, that you can't get answers. Tell him that you are with him no matter what happens, that you are also allowed to get frustrated, and that the frustration does not have any bearing on your feelings for him. You need him as much as he needs you. He needs to know that. You have to say you "need" him ... men want to be "needed." He might be pushing you away because he feels he can't properly take care of you ... he needs to know it's not what he does that is important, it's that he is. Being is more important than doing.

Then, have him try the gluten-free diet. If he gets better, you know it was gluten intolerance. If he does not, then you know you need to keep looking. If he doesn't get better eating gluten-free, go ahead and post about it here ... we know the similar diseases and the diseases that go hand in hand with celiac.

Also, YOU may want to be a regular poster. This board is also for friends and family of celiacs.

First, I would go to him and tell him that you love him, you need him, and you're there for him. You can't help but be frustrated at what you BOTH have lost and what this has done to him. Your frustration does not mean you have a lack of love, you just were hoping for answers you did not receive. You need him to be in your life even if he can't do the things he used to do.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Carla has put into words exactly what I was thinking!! (good advise Carla - ever thought of being a marriage councellor??!)

I can totally relate to what you are going through - my hubby was desperately ill before going gluten-free (negative bloods - positive biopsy)

He went from being a very active physical man to a man so weak he couldn't even get out of bed unaided.

I agree totally with Carla when she says he may be pushing you away.

Alot of men find it hard to be ill ... even moreso when they can't put a name to it.

It can put a huge dent in their male ego (and I'm not being nasty when I say that)

Men are taught from a very young age to be 'strong', 'don't cry' and be the 'carer/provider ' etc..etc .. and somehow being seriously ill doesn't fit into it, especially one that makes you thin and weak.

I was lucky in that I had my Mum and a very good friend to turn to when I felt 'bogged' down by it all.

These message boards keep me sane too!!

Hope you can sort things out :)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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Carla has put into words exactly what I was thinking!! (good advise Carla - ever thought of being a marriage councellor??!)

Actually, it is something I would enjoy. That, and working with the chronically ill, since I know first hand what that does to you.

I do have friends ask me for marital advice ... hubby and I seem like we are newlyweds, yet we've been married for 22 years. :rolleyes: People want to know our secret.

Thank you for the compliment. It is a good idea for the original poster to have someone else to vent to. Not that you wouldn't want to be honest with the boyfriend, but because he can't handle the full stress of it all right now. Vent to someone else, be honest with him that it's hard for you, too.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Guest j_mommy

I'm just posting as a shoulder to lean on!!! I'm sorry for what you are going through.

I have found myself occassionally doing what your sig other is doing. I feel like I don't want to bog others down with my problems....but by being on this site....the people here have taught me how to cope and deal with it all!!!

Good luck to you and yours....I hoep everything works outs!

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WOW! What a response! I expected to come back and just of had a few people look at it but not so many replys/comments!

I have done the supportive thing and made it clear to my partner that he is wanted and needed on a regular basis! I guess I just became exhausted, emotional,confused etc. This is normally the state of my partner not me! I can see how it must have been difficult for him to see this happen to me when I have remained strong through out! Dont get me wrong im under no illusion as to this is far from ending, but it just seems to have been going on so long!

It is made much more difficult when my friends and some (not all) family think that he is either bieng soft, making it up, its psycological or even that he is just lazy. Trying to explain to them it is real is so difficult because it actually sounds ridiculous when im saying it out aloud. (If that makes any sense).

With regards to the time apart, it is just space, however space gives more time to think which again really upset me as there is no end in sight! The good thing was that it led me here! I dont think I have ever spoke to anybody that even slightly understands! So after reading all the comments/advice I just felt a strange sense of calm (maybe its hope,i dunno!). Ive got me a great guy, i know that much. I still dont know if this will eventually break us! But I will not allow it to without doing everything in my power to try and prevent it!

Thanks again you guys! You have really made me feel better! No doubt I will have more questions, frustrations and just plain old tantrums as im in this for the long haul! So if its ok with u, ill probably be back!

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No space. Go back, tell him you love him, as imperfect as he is. ;) You're here to help him through this, that you're in it together. Space only helps for anger ... once the anger is gone, it's time to go back. :)

Please do stick around. The support will be a help to you, too.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Dear Littleone,

Out of curiosity has your significant other been tested for food allergies? My son, who is four, never tested positive for celiacs (via blood testing) but he had all the symptoms. I could not get anyone to listen to me and in fact at times they thought I was one of those moms who were looking for problems. His doctor actually refused to biopsy, feeling it was unneccessary. I finally begged my son's pediatrician to do blood work to test for food allergies. He showed an allergy to wheat, soy, dairy, nuts, peanuts and poultry. I started doing food elimination and discovered on my own that he wasn't just allergic to wheat, but also intollerant of anything with gluten in it. His pediatrician upon seeing the allergy results decided he wanted to do the biopsy. My son had already been gluten free and I wasn't going to make my son suffer again, so I declined and we now just assume he has celiacs based upon the symptoms he has and the way he reacts to gluten. In addition, my father and two of his sisters have celiacs, I just started to assume the odds were in his favor that he was just one of those celiacs that slide undetected. Once we eliminated gluten, he has been doing much better. Sometimes, you just have to trust your gut, literally. I understand both your feelings and your significant others. I've been on both sides of the fence. I think you both really need to have a good heart to heart talk. Let him know you aren't frustrated with him, you are frustrated because he isn't getting the answers that he needs. When you love someone, you feel their pain and frustration. Let him know you love him and hate to see what this is doing to him. Be supportive. Encourage him to try eliminating gluten from his diet to see how he feels. He is not going to see changes overnight, it takes time to start feeling better. It's going to take time to heal. Like my son, I too am a nonconfirmed celiac. I know by staying away from gluten I feel great. I just follow the advice of those on this site and I read a lot. Sometimes medical science just doesn't have the right answers. Sometimes our bodies haven't had enough damage done to them to show positive results. Celiac's is one of those diseases that we don't have all the answers to. If he suspects he has it, tell him to trust his judgement. The only treatment for celiacs is diet change. It isn't going to hurt him to go gluten free and take vitamins. Hope this helps.

Sandy

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Thanks again for all your advice,

My partner has had many many tests, but the biopsy for celiac came back negative. However im pretty sure that he has not had the blood test for it (that should be geting done in the next week).

He has been tested for food intolerences but not by a GP (actual doctor so to speak) but at health clinic. This test was carried out with a resistance meter and not by blood.

It would also seem that there have been a series of errors and mis communication on the part of the doctors & hospitals which again we have been re assured that they will address! Re assurance comes in the form of 'we will get to the bottom of this this time!'. hmm we will see!

He is on a gluten free diet and feels much better off it, he has decided to continue on it for now!

He did suggest that perhaps I could go gluten free with him! I dismissed this as I have no problems and thought that I may harm myself by going gluten free (somehow create a gluten intolerece). But as we share shopping and a house it may help him considerably if I did go gluten free. Does any one know if going gluten free when it is not needed can cause any harm?

As you say only he knows his body and he knows that something is wrong we are going to keep going until he gets better! I will be sticking around, I like it here! Hopefully at some point I will be able to share our sucess story with you one day!

Thanks again!

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My partner has had many many tests, but the biopsy for celiac came back negative. However im pretty sure that he has not had the blood test for it (that should be geting done in the next week).

Just to point out if your partner has been gluten-free for any length of time the blood test will come out negative (you stop producing the relevant antibodies once you remove gluten from your diet)

BTW - I am gluten-free but not a coeliac (my hubby and son are)

The gluten-free diet will not cause you any harm (or cause gluten intolerance) and is in fact quite a healthy diet!!

Nobody actually needs gluten in their diet - there are plenty of other foods out there to maintain a healthy nutritional diet :)

Again, good luck :)


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

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All good advice here with Carla's hitting it right on the nose.

A gluten free diet does not need to be boring. There are many foods you can eat that have nothing to do with gluten. Fresh meats, vegetables, fruits. Just remember to be very watchful of spices, salad dressings, vitamins, soaps, shampoos, lotions, etc. Do lots of research online for products to watch out for.

Being the one with celiac, I can tell you it is very important to not feel that your partner doesn't believe you. It's very easy to misread what your partner is saying too. Just as I know it is hard for you too watch.

You sound like you truly understand him and that is a wonderful thing. Hang in there!!!!


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Thanks nikki,

My boyfriend may know about the gluten and negative tests thing, so he may not be on it at the minute! (He is not home till weekend :( .)

I will mention it when we speak though just incase!

I only know the things that I have learnt from my partner and things that I am learning from here, most of it is quite new to me!

:rolleyes:

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He did suggest that perhaps I could go gluten free with him! I dismissed this as I have no problems and thought that I may harm myself by going gluten free (somehow create a gluten intolerece). But as we share shopping and a house it may help him considerably if I did go gluten free. Does any one know if going gluten free when it is not needed can cause any harm?

Maybe this is causing the rift? I personally have set down the rule that my house is gluten free. I don't want to be cross-contaminated by other people. I think with your BF as sick as he is, he's going to need that sort of dedication to staying gluten-free. Accidental glutenings do happen by people being careless, rushed or just forgetting.

If you're not intolerant of gluten then going gluten-free isn't going to harm you. And if you are intolerant of gluten then it is only going to help you. Most of human kind didn't start eating wheat gluten until just a few thousand years ago, some still don't. So rest assured the glue in gluten isn't responsible for anything like keeping your arms attached. :D Ok, I'm being silly.

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Maybe this is causing the rift? I personally have set down the rule that my house is gluten free. I don't want to be cross-contaminated by other people. I think with your BF as sick as he is, he's going to need that sort of dedication to staying gluten-free. Accidental glutenings do happen by people being careless, rushed or just forgetting.

If you're not intolerant of gluten then going gluten-free isn't going to harm you. And if you are intolerant of gluten then it is only going to help you. Most of human kind didn't start eating wheat gluten until just a few thousand years ago, some still don't. So rest assured the glue in gluten isn't responsible for anything like keeping your arms attached. :D Ok, I'm being silly.

Totally agree here! I find nothing more annoying and insesitive when my boyfriend brings gluten things that I love into the house. One time it was pizza and I made him eat it all right then while I was locked in the bedroom. (I admit, I was PMSing and that was first encounter with pizza scicne gluten-free). I don't mind cookies, as long as I have cookies available, or even stuff that I'm luke warm about. But pizza... that's evil.

My Boyfriend has been eating gluten free with me, not exclusively, he still gets hogies at lunch, but i'm not there. But we cook one meal and it's gluten free.

Things that have gluten in them really don't add much nutrtional value, except fiber and you can get that lots of places.

I would really suggest helping him by following the diet, it might even help you, and It will make him feel more support from you.

Good luck!


Dx 3/23/07

Gluten free 3/27/07

Intolerant:

Gluten

MSG

Allergies:

Ragweed

Honeydew

Cantalope

Nickel (jewelry)

Dx'd Lymphocytic Colitis 6/16/08

I am a bad silly-yak!

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ok gluten free it is!

Im quite nervous about actually doing this because im an incredibly fussy eater. I have tryed some of the gluten free cookies and cakes and they are ok.

I love bread! :( The bread I have seen in the supermarket (gluten free) looks auwful.

Maybe the compromise here is to have a gluten free house!

It needs to be done though so there is no point in worrying about it! Ill do anything to try getting him better! We need our life back!

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ok gluten free it is!

Im quite nervous about actually doing this because im an incredibly fussy eater. I have tryed some of the gluten free cookies and cakes and they are ok.

I love bread! :( The bread I have seen in the supermarket (gluten free) looks auwful.

Maybe the compromise here is to have a gluten free house!

It needs to be done though so there is no point in worrying about it! Ill do anything to try getting him better! We need our life back!

You have gotten some great advice here from everyone and I think you are making the right choice in making the home gluten-free. I have only one other brief thing to add.

Don't forget that gluten is also a neurotoxin for an awful lot of us. It has the ability to take any rational thought process we have and throw it right out the window. Many of us when glutened become depressed and irritable and some of us can become frankly irrational. I have a son I worry about greatly because of his gluten induced suiciadal ideations. I have even been know to have those feelings myself. After being gluten-free for 5 years the corelation between these thoughts and gluten are obvious enough for me to be able to say 'it is the gluten talking and it will pass' but that was not the case for many, many years. I said and did many things under gluten that when my mind was clear were hard to take back. My family now realizes that this goes on and that makes it easier for them to deal with. If your guy seems to do the same thing if you discuss this aspect of a glutening and try to agree that no one will make any life changing decisions, like 'space' while under a gluten cloud that may help. Just be sure to do it on a day when he is thinking clearly and if the home is going to be gluten-free those bad days may soon be behind you for the most part.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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There is a fabulous bread recipe that has been posted on this site. It is for gluten free flax bread and the recipe can be found at www.recipezaar.com

It is so much better than the breads you can buy. I have not tried any of the mixes, however. This bread can also be modified and the recipe is very forgiving. The first time I made it, I didn't have the flax meal and subsituted almond meal. The bread actually rised, so it has more of the "bread" consistency. I also formed into into rolls - trying to make hamburger buns - they were too small for hamburgers but were great for sandwiches.

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Guest micah

Hi little one,

This site is totally unrelated to celiac, but I found their story (about someone in a similar situation as you - one person caring for another very sick person) and it is really inspiring. It is at www.forgrace.org Click on "our story." It is a short story about a man who stood by his girlfriend who got terribly sick with an unknown illness. I really liked it. It was in Women's Day.

Micah

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My husband wanted to break our engagement when he first got ill...he was confused, unhappy, depressed, and didn't want to screw up my future. We talked long and it, cried and realized we'd be unhappy apart from each other.

We've been married for 28 years this year.

I do eat gluten at home and in his presence...he doesn't feel it's a problem and feels he shouldn't be made into a problem since life is made for living. I do however keep the gluten down to a minimum.

Wishing you peace


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Nikki-UK you are right on the money when saying the blood test will come out negative for celiacs if you've been on a gluten free diet for any length of time.

I have celiacs and the blood test came back negative. It was my gastroenterologist that persistent and after doing a colonoscopy insisted on a performing an endoscopic biopsy of my small intestine. That report came back with a 99.8% diagnosis of Sprue Celiac. Like a lot of people with celiacs, I originally got sick and lost approximately 55 lbs in 5 weeks. Every time I ate I would get extreme cramping and spastic bowels so I basically stopped eating to avoid the pain. I should point out that my wife is a Registered Nurse so the concern was even greater as she was trying to figure out what the diagnosis was.

I have been on a gluten free diet for over 10 years and normally have my diet under control. Though as most of us have become accustom to doing, you have to read all the labels. There was one point that I got sick and couldn't figure it out until we read the label on Sunkist Orange Soda to find they put modified food starch in it.

Though my diet is under control I have developed a few of the side affects of celiacs such as Dermatitis Herpetiformis, Degenerative Bone Disease and Arthritis. One of the most important facts for young people with celiacs is to take gluten-free Vitamins and also get checked for vitamin D. If you are not absorbing Vitamin D then you will not absorb any of the C vitamins.

My wife and family have also been very supportive of me and celiacs so that most family meals are 100% gluten free.

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I strongly encourage you to start a gluten-free diet! My mom was VERY sick last summer, and she was tested for Celiac, but it came back negative, however she decided to try gluten-free dietting, and within a week there were MAJOR improvments, now after a year she is almost 100% better!

many prayers!

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Well, gluten free bread and pasta is just not tasty. Obviously because it does not conatin the main thing in gluten: opiates.

So I never buy glutenfree.

I just avoid normal berad and eat rice waffles instead. Wuith youghurt or jam or even ham it tastes like a real toast.

Just my twopences.

by the way it helped me a lot to go to 12step sites. Like Narcotics Anonymous. they are people self-diagnosed as sensitive to grugs or alcohol aso they have a great assortiments of tricks how to deal with life if the thing you carve you cannot digest.

It boils down to values. i want to preserve this relationship and I need to eat glutenfree for it. So then this should be important enough to keep me on the diet. Self-respect is enhanced by self-discipline.Such values help me too. But of course I am sure I am celiac because I feel so bad if I slip and eat some gluten.

geo

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Actually, my hubby and I have found some AMAZING gluten free breads and pastas. Kinnikinnick bread is pretty good as far as pre-made bread goes. I prefer to make my own. Gluten Free Pantry makes a good bread mix. Chebe also makes AMAZING mixes for pizza crust, breadsticks, etc... plus they are very easy to make. Quinoa pasta is good. Tinkyada pasta is even better. It holds up really well in baked pasta dishes. My hubby loves "real" breads, etc... but he loves these. Pamela's makes amazing brownie and cake mixes. Trial and error will ehlp you find substitutions you both like. Don't give up. I promise it will get better.

God Bless,

Treen Bean


Treen Bean

A gluten free goddess in training! - 2 years and counting

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