New Here, Our Story

[lilu]

We've had a strange journey so far, and as we have MD appts, but no test results yet, we're in a difficult transition time.

My husband started developing full blown symptoms about 2-3 years ago - elimination problems, rashes, gas, joint pain, brain fog, emotional/behavioral problems, and much more. He has seen more specialists than you can imagine, and none of them have even considered celiac disease. He even saw a GE who ran tests and told him he had NO INTESTINAL FLORA at all!!! and still no tests for celiac disease. This same GE told him he was positive for Chrone's and that he probably has IBD. His father was a type 1 Diabetic, his mother died of colon cancer, and he has an aunt with Chrone's. Hmmmm..... anyway, a friend sent him a link with info about celiac disease and the more we read, the more clear everything became, so he called the local support group and got a referral for a GE who has diagnosed and treated celiac disease, and now the appt is scheduled. Thank God! Looking back, however, there are red flags waving in the distance (thoughout his life) - unexplained reactive hypoglycemia symptoms, tinnitis, inflammatory sinus problems (to date 7, yes 7, sinus surgeries), periodic depressions, periods of extreme fatigue, trouble maintaining his weight (he is 5'10" and about 160 lbs).

The funny thing is, the more I read (in preparation for becoming a gluten-free cook and to better understand HIS potential disorder), the more I started to think "this could be me, too". I don't have the same symptoms he has (his are pretty classic) - I DO have, however, chronic low serum ferretin (iron deficiency anemia) without "apparent" cause, vitamin D deficiency, restless leg syndrome, chronic diarhhea (4+ years now - good times...), migraines, sleep apnea, systemic joint pains (all over), and GAS!!!!!! embarrassingly too much gas. I started puberty very late - almost 17 when I started menstruating, and was underweight until that time. Since my late teens, I have been severely overweight (it was sudden - I went from the skinny kid to being plus sized in about a year), but my weight is inconsistent with the amount of food I eat.

So we start thinking about our daughters, and there are signs there as well, especially w/the younger daughter - underweight, almost 18 and the only way she HAS periods is to be on the pill (just started a few months ago), joint pains, distended abdomen especially after eating, frequent stomach aches, trouble concentrating, etc. etc. etc. Our older daughter doesn't complain much about digestive type issues, but she has frequent migraines, lifelong dermatitis, low energy.

All in all, put together with our family histories, we think we may have a potential nest of either celiac disease or non-DC gluten intolerance.

The hardest part of the last several years has been the toll on our marriage. My husband's mood swings, depression, fatigue, irritability, and brain fog, and my inability to not take all of this so personally, has led to a dismal relationship. We've been to workshops, counseling, etc. He says he wants to make things better, but he just doesn't have the energy to really participate. He basically works all day, comes home, eats dinner, and crawls into bed in pain and exhausted and sad/feeling hopeless. gluten-free may NOT resolve our relationship issues, but I gotta hope that if gluten sensitivity or celiac disease is the culprit, we will at least get to examine and work on our relationship from a healthier place once diagnostic testing is done and we can begin living gluten-free. I have searched but not been able to find any information on the effects of non-diagnosed celiac disease on relationship quality, but it just seems there's got to be a link.

I welcome any information, insights, stories as we work our way through the process.

[mushroom]

Welcome, lilu. I am glad to hear that you are finally on a path to possible healing, both physically and emotionally. I think you have pretty accurately thought this through. You might be surprised how much your husband's moods and energy change when he is no longer being bombarded with gluten. Why don't you get yourself tested as well? If you both carry celiac genes there is a good chance that your children will too and a gluten free household would benefit everyone.

Let us know how things turn out.

[RollingAlong]

My spouse had many of the same issues:

tinnitus, fatigue, mood/motivation issues, trouble with weight, etc. But we had been married a very long time before his behavior changed. He wasn't ill; he just seemed "off." If I hadn't known him for many years before the fogginess/irritability/inability to cope without 9 plus hours of sleep; I don't know what would have happened. It would have been much more difficult.

I went gluten free/casein free with him. I didn't realize what a difference it would make to my health. I do not have relatives with Chrons or autoimmune conditions. But I got rid of my migraines and my chronic daily headache; and I sleep a lot better and my moods are much more even. No PMS type issues of any kind anymore.

For my spouse, casein is a big problem, just as big as gluten (mood, brain fog). And soy. He did not tolerate eggs for about a year. And all of his tests and biopsy were negative. So try the diet anyway!! You can drop casein now, it won't affect the testing. I've read some neurologists are now suggesting casein free diets for migraineurs too, FWIW.

There's some discussion of diet changes and moods/relationships over at Marks Daily Apple and PaleoHacks. (the Paleo diet is grain free, and very low in dairy.)

Best wishes to you all; please keep us posted.

[Hawthorn]

Hi Lilu.

Wow, you're having a hard time of it. I'm not sure that what I am going to say will help in any way shape or form, but at least you'll know you are not alone.

I have been ill for several years with major depression issues. Always had them since teenage years, but the last 8 years have been the most horrific. Hospitalised several times, really unwell type of depression (including a suicide attempt) There have been times during this I HATED my husband. With a passion. I even kicked him out several times. I'm amazed he's still here to be honest, because I don't think I would be if I'd had to live with me.

A year gluten free many of these problems were resolved. It was like being freed - I felt like a normal person again. It was an endless cycle of getting sad, getting mad, getting guilty because I got mad, so getting sadder/lower/self hating more and more. I was able to be around people without getting panic attacks. I could even go shopping. I avoided public places for a long time because I just couldn't cope with it.*

I recently had a gluten challenge. 3 weeks I got into that before I attempted to end my marriage again which had been quite fine off the gluten. My husband refused to go. I've been off gluten since friday now and already I'm feeling calmer. Not normal, but calmer.

So, as you see mood issues were a huge part of this for me. Far worse than any physical ones I had. I would liken it to being on drugs to be honest. I really do believe that it's that destructive for some.

Off the gluten I was able to come off anti depressants, anti anxiety pills and sleeping tablets. Gluten challenge? I seriously considered going back on all of them.

There IS hope there for your marriage. Counselling may still be an idea you can work with if you guys feel better off the evil G, since for me at least I had some habitual behaviour issues - I was able to work with these Gluten free though. I had cognitive behavioural therapy some years ago and that has really come into it's own now I can think straight. It was a lifesaver back then - it didn't stop the suicidal feelings, but I was able to keep myself safe with some work.

There are still times of course that my husband and children drive me insane, but these are short lived and I figure probably a part of life for even the most normal of families. There were times in the past that the smallest things felt like the end of the world.

I really really hope that things work out for you and you all feel better for being gluten-free. I hope all of that wasn't TMI - I just wanted to say that it's not hopeless, and if you do have issues with it that it can be hugely destructive to the person suffering and the people around them. My family is living proof of that. My only wish is that someone, somewhere had suggested that food may be what is causing my mental health to be so poor, but despite all of that that I told you (and there is more that I won't go into here) it was never suggested even once.

Good luck

[lilu]

Thank you all for you replies. They give me hope. I don't expect any miracles... A lot of damage has been done during all these sick years... But I am hopeful that with our heads clear, we will at least have the opportunity to get to know each other again, see if we can resolve the old wounds, and make a good go of it.

I am also looking forward to feeling better myself. It's an interesting thing to be "not really sick", but not feel well enough to do higher energy things (or more than 1 or 2 things a day... I.e. Today is the 4th, so I plan on taking it easy all day so I'll feel up to fireworks).

My symptoms have always been what I would call low grade, or illusive, and I grew up in a home where feelings of general malaise were considered weak and lazy. We never talked about feeling unwell, our mantra was basically "suck it up and deal!" As such, I may never have made connections and considered diagnosis or a gluten component had the nubby not gotten so sick. It wasn't until I started reading and thinking "hey, I've got that, and that, and that..." that I started wondering. I can check so many items off the symptoms list and family health history list that hubby said "it wouldn't surprise me if your system's in worse shape than mine!" and for someone as sick as he feels to think that, well...

Either way, as soon as the testing is done, we're going gluten free, and then the proof will be in the pudding. All we have to do now is ride it out til then, which is proving difficult enough for now. Hubby is refusing to eat obvious gluten sources. He knows this could lead to misdiagnosis, but he is having a hard time "poisoning" himself intentionally. He says knowing what will happen if he eats gluten filled food makes it too hard to even choke it down. He has "tested" himself with several gluten free days in a row and felt soooo much better we are sure there is a link, even if it is gluten intolerance rather than celiac.

The journey continues! Thanks again for all your support!

[Poppi]

He knows this could lead to misdiagnosis, but he is having a hard time "poisoning" himself intentionally. He says knowing what will happen if he eats gluten filled food makes it too hard to even choke it down. He has "tested" himself with several gluten free days in a row and felt soooo much better we are sure there is a link, even if it is gluten intolerance rather than celiac.

The journey continues! Thanks again for all your support!

Do you have a reason to need testing? I chose to self diagnose with an elimination diet. I knew celiac was a high likelihood because my father has celiac and my mom is gluten intolerant and possibly celiac (no biopsy). I tried to do the gluten challenge twice and both times lasted less than a day before I was in too much pain to continue. The upside for me with no "offical" diagnosis is that I have nothing to declare when applying for life and critical illness insurance. In the states I gather a preexisting illness can be a problem with medical insurance as well.

Since the treatment for celiac and non-celiac gluten intolerance are the same and don't involve a doctor or any medical staff at all then blood work and a biopsy aren't critical. If you hubby feels better off gluten then maybe he should just go off gluten.

[lilu]

Do you have a reason to need testing? I chose to self diagnose with an elimination diet.

There are a couple reasons...

1) We have two teenage daughters and want to know if there is a genetic autoimmune component. If either (or both) of our results are positive, we will have both of them tested as well. An actual diagnosis would carry more weight than our personal opinions as they venture out to college and young adult life.

2) Hubby travels a lot for work... Long distance flights, etc. Having a diagnosed condition with medical documentation will make traveling with his own food easier. It is my understanding that with medical documentation, the TSA allows passengers on restrictive diets like gluten free to carry food with them through security, etc. Making it easier to have gluten free food available when traveling.

The good news is that the specialist had a cancellation and hubby got in for an appointment tomorrow! (my appt is Friday - different insurance, different doc). So as long as they draw blood, the wait is over! It is my understanding that as long as he can get in for the biopsy fairly soon... I.e. less than a week or so, the villi will not have had much chance to reverse and accurate diagnosis should still be available.

[lilu]

Well the DH's test results are back, and he's well within normal sero ranges, but DQ2/DQ2 genetically. He now has to decide if he wants to proceed with biopsy, but he may not, given his experience with the GI (not particularly favorable). Plus, he's 2 weeks into gluten-free diet with very positive initial results. Getting him to be serious though is a little difficult... He's all into reading labels and making "best guess" picks at restaurants, but he thinks getting a new toaster is going overboard, and I'm not sure, but I don't think he is asking for gluten-free menus when out on business dinners... Text from a business trip last night... DH: "I had ribs and fries at Chili's and felt pretty bloated and gassy". Duh! I responded with, "wow, I'm surprised that fries and ribs are on the gluten-free menu, due to oil CC and common sauce additives"... No response.

I just have to keep telling myself, it's his body, his choice, his responsibility. Meanwhile, I'm glutting myself thoroughly while he's out of town in prep for my own blood work. Good times for the mouth, super icky tummy!!!!

[RollingAlong]

ahh, he's an experiential learner - I married one of those too!

[lilu]

ahh, he's an experiential learner - I married one of those too!

HA HA HA!!! Glad to know someone else married to an intestinal Dennis the menace!