Positive blood test only - so husband doesn't support me

[pag794]

Hi everyone, I am suffering terribly right now.  My husband is totally unsupportive of my diagnosis, which makes it hard both physically (because he's not careful) and emotionally.  I have always had GI issues (even as an infant I was sensitive to everything), but 2 and a half years ago I started having more severe problems including pain in my URQ that I had never had and greasy loose stools.  My uncle had just been diagnosed with celiac so I suspected maybe it was that.  I used an at-home TTG test that was positive and also had a DNA test that was positive for the main celiac gene.  That was enough for me, so I gave up gluten and started feeling better, but not completely great.  The URQ pain went away and has never come back, but I continued to have loose stools (not watery).  But overall I felt better... my headaches went away, my tingly feet got better, and my moods leveled out. Fast forward a year and a half, and I started to get headaches again, so I went to an allergist/immunologist who ran a bunch of tests for autoimmune diseases and allergies.  They were all negative but I did react to wheat and other grains on my skin prick test.  She also checked my TTG and it was mildly positive even though I had been gluten-free for 18 months.  She officially diagnosed me with celiac and said that I must still be getting gluten somewhere -- she referred me to a GI and nutritionist.  I didn't go (I'm terrified of getting a biopsy).  My problems with my husband started then.... He said she wasn't a "real" Doctor (???) and that he would only believe me if I had a biopsy.  I am NOT going back on gluten to have a biopsy!  It's been 2.5 years off gluten now, and once in a while I have a reaction. I seem to be sensitive to so many foods that I don't eat much of anything beyond fresh fruits and veggies and grilled chicken.  I'm very careful.  Well 3 days ago, I decided to have a gluten-free pizza from a local restaurant and yesterday I had a Luna Bar that has oats in it (I think I'm sensitive to oats so I don't eat them).  Within 2 hours of eating that bar, I had very loose stools, joint pain, crushing fatigue, and I was SO irritable and emotional.  Today my hands and feet are tingly and I have a terrible headache.  Sometimes I get so depressed because I feel like I can't eat ANYTHING and not having my husbands support to deal with it is awful.  There are days I don't even want to keep living.  Today is one of those days.  If it wasn't for my kids...

My question is, do you guys think I have celiac - positive blood test, positive gene test, family history, positive results with gluten-free diet?  If I go to a GI at this point, will he tell me I need to go back on gluten to have a biopsy?  I cannot do that.

[rockstarkate]

This sounds like a relationship problem more than a health problem. If eating gluten makes you feel bad, your husband should support you. It makes me angry for you to hear that he is treating you this way. 

Nobody on the internet can diagnose you. You should go to the GI doctor and talk to them about all of your concerns. You don't have to go through with the biopsy, but you should explain to them why you don't want to do it and see what they think. And maybe some marriage counselling! Your husband sounds like he's being not very nice, and you shouldn't put up with that. You deserve better. You shouldn't have to prove anything to the person who is supposed to be your partner.

[Graham]

22 minutes ago, rockstarkate said:

This sounds like a relationship problem more than a health problem. If eating gluten makes you feel bad, your husband should support you. It makes me angry for you to hear that he is treating you this way. 

Nobody on the internet can diagnose you. You should go to the GI doctor and talk to them about all of your concerns. You don't have to go through with the biopsy, but you should explain to them why you don't want to do it and see what they think. And maybe some marriage counselling! Your husband sounds like he's being not very nice, and you shouldn't put up with that. You deserve better. You shouldn't have to prove anything to the person who is supposed to be your partner.

All roads to celiac disease. Staying gluten free is very difficult and it requires support not only from your husband but your family and friends. You can still enjoy food and eat great meals but you have to make an effort. On the upside there are more and more products available and the disease is getting more recognition. Wheat, Oats, Barly,Rye all have gluten so you need to avoid these, you probably know this but you need to check all ingredients on the labels. For me you have all the symptoms I had when I was diagnosed 6years ago. Keep a food diary and try to focus on what you can have and not what you can't have. Get creative in the kitchen. You will beat this, I know you can.

[JKS1221]

I'm sort of in the same boat. I've been dealing with symptoms for the past three years and was just recently hospitalized because of severe anemia due to my celiac, which I was just officially diagnosed at the end of January.  My husband never has supported me when I'm sick and has even called me a hypochondriac. Saying that I fake being sick so I can sit on the couch all day, despite the fact I was pale as a ghost, had shortness of breath from walking to the bathroom, 30 pounds underweight, and so weak I couldn't walk up any sort of steps etc.. I was out of the hospital for two weeks when I had to go back for another transfusion and he wouldn't drive me because "it was my fault I was sick". So, I drove myself to the hospital, severely anemic, crying because I was scared and alone and somewhat peeved.

Long story short, I was officially diagnosed with celiac. When I came home from the hospital I came in to my house to be confronted by my in laws telling me that I was "wasting my life acting sick" and I was "clinically depressed" and that I needed to "take some happy pills". They didn't ask about, what the doctors said, or even asked if I was feeling ok. They just yelled and criticized me for "being a hypochondriac" and that I needed to quit and basically be June Cleaver.

Its a month out now and I'm feeling overall better, other than some joint pains and diarrhea.  My husband still doesn't support me. I can tell every time I mention something about how I'm feeling, he completely shuts down and has even told me he's tired of hearing about what's wrong with me. 

I know how you feel. The best advice I can give you is to take care of yourself. Chances are (even thou I recommend going) if you go to the GI and get an "official" diagnosis, his view on it won't change. All you can do is look out for you. You're your own advocate. Wishing you the best. You can do it!

[pag794]

5 hours ago, JKS1221 said:

I'm sort of in the same boat. I've been dealing with symptoms for the past three years and was just recently hospitalized because of severe anemia due to my celiac, which I was just officially diagnosed at the end of January.  My husband never has supported me when I'm sick and has even called me a hypochondriac. Saying that I fake being sick so I can sit on the couch all day, despite the fact I was pale as a ghost, had shortness of breath from walking to the bathroom, 30 pounds underweight, and so weak I couldn't walk up any sort of steps etc.. I was out of the hospital for two weeks when I had to go back for another transfusion and he wouldn't drive me because "it was my fault I was sick". So, I drove myself to the hospital, severely anemic, crying because I was scared and alone and somewhat peeved.

Long story short, I was officially diagnosed with celiac. When I came home from the hospital I came in to my house to be confronted by my in laws telling me that I was "wasting my life acting sick" and I was "clinically depressed" and that I needed to "take some happy pills". They didn't ask about, what the doctors said, or even asked if I was feeling ok. They just yelled and criticized me for "being a hypochondriac" and that I needed to quit and basically be June Cleaver.

Its a month out now and I'm feeling overall better, other than some joint pains and diarrhea.  My husband still doesn't support me. I can tell every time I mention something about how I'm feeling, he completely shuts down and has even told me he's tired of hearing about what's wrong with me. 

I know how you feel. The best advice I can give you is to take care of yourself. Chances are (even thou I recommend going) if you go to the GI and get an "official" diagnosis, his view on it won't change. All you can do is look out for you. You're your own advocate. Wishing you the best. You can do it!

That is so sad!  I thought I had it bad, but I was in tears reading your story.  It sounds like you are very strong. I hope you continue to improve and feel better.  

Thank you everyone for your support - it truly lifted me up today.

[ironictruth]

Awful. I am having all sorts of weird issues too with only weak positive bloodwork twice, the gene, and a sibling with confirmed celiac. My biopsy was negative. I gave up gluten for 8 months then went back on for 6 weeks for the biopsy. You should be eating it 12 weeks before bloodwork. So for lack of better words i have been f@*&ing around with it on and off all of Feb thinking about doing 12 weeks on gluten and I feel like crap. Part of my concern is that I may have other stuff going on so I did not want to assume it was gluten.

I am pretty sure my boyfriend thinks I nuts but he keeps his mouth shut at least and acts supportive.

The 2 things that made me decide last week that I need to go gluten-free for good and stop screwing around:

1) My sibling who has celiac informed me that he was at one point probably in my shoes, getting an immune response with symptoms which he ignored, but his gut was not yet wrecked. Eventually, it became wrecked and he lost a lot of weight, had a positive biopsy, and is now ridiculously sensitive to gluten. It is a progression and all starts somewhere. 

2) My primary care related the progression to being pre-diabetic. What happens if you continue doing to your body the things causing the high blood sugars? It progresses and you develop full blown diabetes, needing insulin and messing up your organs. But if you catch it early, you may be able to control your sugars through diet, and minimize damage to your body. 

I do not know how long you have been married but my heart would be totally broken if my significant other considered the above and did not care. 

Please speak with your primary and GI and make the decision for you. Do not put your health at risk to appease your husband's attitude. It is borderline abusive. 

[SLLRunner]

 

@pag794, have you thought of getting counseling? Maybe ask your husband to go with you?  Only testing can determine if you are celiac. You need to go back to the GI.

Oh, also--since your testing showed a sensitivity to wheat, have you tried eliminating all wheat only? I have a friend who is sensitive to wheat only but can eat barley and rye and other foods with gluten in them.  

@JKS1221, your husband and his family sound abusive, and also uninformed about the seriousness of celiac disease. Do they know that celiac means that gluten is the determining factor as to whether you sustain further damage to your body or the damage to your body heals? 

Even if you did not have celiac and chose to eat gluten free because it helps alleviate your symptoms, that is your business and you should never be belittled for it.  It's almost like your entire family is taking your celiac diagnosis personally. 

 

[SLLRunner]

1 hour ago, ironictruth said:

Awful. I am having all sorts of weird issues too with only weak positive bloodwork twice, the gene, and a sibling with confirmed celiac. My biopsy was negative. I gave up gluten for 8 months then went back on for 6 weeks for the biopsy. You should be eating it 12 weeks before bloodwork. So for lack of better words i have been f@*&ing around with it on and off all of Feb thinking about doing 12 weeks on gluten and I feel like crap. Part of my concern is that I may have other stuff going on so I did not want to assume it was gluten.

I am pretty sure my boyfriend thinks I nuts but he keeps his mouth shut at least and acts supportive.

The 2 things that made me decide last week that I need to go gluten-free for good and stop screwing around:

1) My sibling who has celiac informed me that he was at one point probably in my shoes, getting an immune response with symptoms which he ignored, but his gut was not yet wrecked. Eventually, it became wrecked and he lost a lot of weight, had a positive biopsy, and is now ridiculously sensitive to gluten. It is a progression and all starts somewhere. 

2) My primary care related the progression to being pre-diabetic. What happens if you continue doing to your body the things causing the high blood sugars? It progresses and you develop full blown diabetes, needing insulin and messing up your organs. But if you catch it early, you may be able to control your sugars through diet, and minimize damage to your body. 

I do not know how long you have been married but my heart would be totally broken if my significant other considered the above and did not care. 

Please speak with your primary and GI and make the decision for you. Do not put your health at risk to appease your husband's attitude. It is borderline abusive. 

If eating gluten free makes you feel better, then it's important. It is our family's business to the point where they need to respect our decision and be supportive in that way.  However, the bottom line is that you feel better eating a certain way. That's absolute gold because it works for you.

At this juncture, I am waiting to hear back from the GI doctor regarding my biopsies about ten days ago. I have a week or so to wait from what I understand,  but I have been eating (mostly, I might be missing some things, but not intentionally) gluten free for about 12 days now and a lot of my acid reflux symptoms have calmed down.  After months of my chest and stomach hurting, loose stools alternating with constipation, having an EKG because I thought I was having heart issues, fluttering chest, tingling extremities, throat burn, brain fog, tiredness, and difficulty sleeping, I am happy I have found something that is helping, even though it's a slow progression. 

Is my significant other supportive? He's trying because he knows that how I'm eating right now is helping me. That's what's important.

[pag794]

@SLLRunner I've thought about counseling, but figure that will give my husband more reason to think this is all in my head.  I guess I should give it a try though.

[notme]

really and truly, it doesn't matter if you have celiac or a gluten sensitivity, if eating a gluten free diet makes you feel better, the hell with everybody else.   goodness - he should be happy you're feeling better!!  if you've ruled out any other explanation for your symptoms (i know most of us were pincushions/lab rats for a long time "maybe it's this - nope, maybe it's that - negative" )   i know all my friends and relatives were so happy when i got diagnosed and husband was happiest - especially when i was *noticably* better and started gaining back weight!!  i hope he rethinks his opinion  :/

that being said:  my husband turns into the biggest a-hole on the planet when i am glutened  when i feel better, he is really cute (hint:  it's me turning into the biggest a-hole on the planet when i am glutened, lolz) i hope you feel better  

[bartfull]

I'm sorry but those of you who have husbands who blame your illness on you should leave them. NOBODY has a right to belittle someone like that. A husband is supposed to be supportive and CARE about you. If he doesn't, what is the point of being married - so you can have someone to kick around???!!!

No matter what your financial situation is, you CAN make it on your own. It make be tough for a while but you can do it, and you will be surprised at how easy financial difficulties are compared with abuse. And make no mistake, it IS abuse.

Ditch these clowns!!

[JKS1221]

@pag794 Thanks. I just deal with it for now. The thing I'm focused on right now is finally getting back to normal and not feeling like crud anymore.  So far I'm feeling better despite a few hurdles I have to go over. Hang in there. It'll all work out!

@SLLRunner I've tried explaining to them the seriousness of everything, but they think they know best. I'm also a type 1 diabetic and they still think that it's just taking a shot and not eating sugar. They have no idea that no matter how perfect you take care of yourself, you can still have the complications. My husband has even told me he won't put money into an insulin pump because he "doesn't want to get screwed." But that's ok. I just have to take care of myself.

I just want to say how wonderful this group is. It makes me feel so much better knowing I'm not the only one going through things. You all are great!

[cyclinglady]

14 minutes ago, JKS1221 said:

@pag794 Thanks. I just deal with it for now. The thing I'm focused on right now is finally getting back to normal and not feeling like crud anymore.  So far I'm feeling better despite a few hurdles I have to go over. Hang in there. It'll all work out!

@SLLRunner I've tried explaining to them the seriousness of everything, but they think they know best. I'm also a type 1 diabetic and they still think that it's just taking a shot and not eating sugar. They have no idea that no matter how perfect you take care of yourself, you can still have the complications. My husband has even told me he won't put money into an insulin pump because he "doesn't want to get screwed." But that's ok. I just have to take care of myself.

I just want to say how wonderful this group is. It makes me feel so much better knowing I'm not the only one going through things. You all are great!

Have you read "Think Like a Pancreas" or "Dr. Richard Berstein's Diabetes Solution"?  Nice tips from those who have TD1 to help avoid complications.    Also, have any of your relatives been tested for celiac disease?  It is genetic!  

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[SLLRunner]

@JKS1221, I am so sorry that your family is not supportive. I personally could not live in that kind of situation.

[JKS1221]

@cyclinglady Thanks! I'll check those out!

[jean9v]

My Doctor told me that if it walks like a Duck... it is a duck... I went on the diet and and felt better within days...my doctor said that no other tests were needed.. and he was correct... I can tell if I have just a bit of gluten.

You do need to stay on the diet... and get stronger  both physically and mentally.  Check everything for gluten, you will be surprised that has it in it... I am also sensitive to sulfites like you will find in wine... never realized that until I became gluten free, so you may have something else as well. What about Dairy... ?  You also need to add additional vitamins to your diet.  Since you have celiac, you do not absorb everything from your food.  Get away from those Luna bars... just eat clean... make everything and you will be better off.

As for your husband.... have his food available for him.  My husband actually prefers the gluten free diet, yes, he does crave certain things every once in awhile so, then he eats them.  You need to stay healthy for yourself... is there any food that your husband likes/loves, but, gives him heart burn or issues...?   if so, make those all this week... torture him...LOL... let him experience a little difficulty. 

And remind him... Happy Wife... Happy Life.

 

 

 

[pag794]

@jean9v Thank you!  All good suggestions that I need to try.  It can be so difficult at times! I am so furious right now... I just posted on the medication board about how I emailed a drug company to see if my medicine has gluten in it; they replied that they "can't give medical advice"!  I didn't ask for medical advice!  They sent me to a list of ingredients, but I can't tell if there is gluten in there.  Ugh!