Several Yrs Of Illness

[tjb1226]

Is it possible to have had celiac disease for several years before I was DX correctly? I just found out. I missed a lot of time from work over the years. My employer thinks it's a behavior problem. I am lost for words..

Tom

[JsBaby-G]

Tom,

Absolutely!!! It has been said that you are born with it and it gets triggered. I have had it all my life and only got a dx when I was 15. I have missed so much school on account of all kinds of things due to Celiac. Doctor's even told my mother I was doing it for attention so don't let anyone else tell you anything about your body but you!!

[debmidge]

Hi All

My husband has just been informed that he has had celiac since he was 27 and he's now 53. Over the past 27 years three other gastros claimed he had Irritable Bowel Syndrome - new gastro says that they were the wrong diagnosis. The new gastro is correct because after 4 weeks on gluten free diet we noticed remarkable changes. Doctors are not God; even though they think they are.

So it's possible to have had celiac for all that time and now you have a diagnosis. For years my husband new he had something more than Irritable Bowel and kept saying "There's a name for what I have and someday someone will find it." We last Fall we found the name for it: celiac sprue.

[debmidge]

Hi All

I wanted to add that my husband lost his weight and vitality to this disease. He had a physique like a Hercules when I met him (at 24) as he lifted weights; when he got sick he rapidly lost 30 lbs. of muscle and fat. For years now he can't work - he had been too busy all day either in the bathroom (remember undiagnosed celiac at that point) or making sure he got enough calories in him (He went from about 180 lbs to 130 lbs in 3 years). I knew that somehow he wasn't absorbing calories, fats, etc. but couldn't figure out why. It seemed like nothing would stick to his ribs.

People (like my family and friends) thought he was just lazy for not working and making his illness up. They'd say things like "Oh, my cousin has irritable bowel and works, a lot of people have it and work." They couldn't help comparing him to someone that they knew with IBS or colitis. We were shunned due to this. I became his whole world and I knew this wasn't mentally healthy for either of us. Once he did volunteer work a week straight for our church and one day he discovered that someone stole his lunch that had his name on it. He finished the day without eating anything.

Now he is suffering not only from celiac disease, but severe depression. That's why I come into this forum and not him; he has no motivation due to his depression. Just lately he listens to me as I read from the forum to him, so I am glad that perhaps an interest is developing.

[YankeeDB]

Debmidge, depression is SOOOO treatable (I work in depression research) with medications and therapy and these may be worth exploring in your husband's case. There is a good chance the depression will remit when he has been gluten free for enough time, but meanwhile, he can feel much, much better with treatments that have been proven to help. Of course, depression can exist apart from celiac disease and that may be the case here--who wouldn't be depressed after what he has gone through? If your husband is not interested in meds and/or therapy at this time, then he might consider light therapy which is beginning to emerge as a treatment for any depression, not just seasonal affective disorder. (Search on "seasonal affective disorder" or "light therapy" to learn more. Note that some companies let you try their light box for 30 days and return it if it is not effective.) There is hope! Best wishes!

[Guest shar4]

Hi all,

I just wanted to comment. After I had my biopsy, my Dr told me that my condition had to have been active for YEARS to do the amount of damage that I had. I was 44 when I was diagnosed.

On another note, last summer, before I knew what was going on, I was terribly depressed and seriously stressed out, I was crying all the time, not sleeping, yada, yada. ANyway, I started taking Effexor in August, was diagnosed in October, and went gluten-free Halloween. Since then the depression has lifted, I feel great, and I was just told that my iron is still low, as is the B12. This concerns me to a degree, because, if I feel this good now, when everything reaches normal, I'm afraid I might get committed to an asylum for being just plain giddy and goofy. .

I am in the process of contacting my doctor to see about tapering off the effexor, and see if the good mood holds.

Just had to share that.

Blessings to all.

[debmidge]

Yankee DB, sorry it took so long for me to get here...sort of got lost in the boards. My husband is very interested in the meds for depression ..but, he gets bad side effects from them. they work wonders on him, but he has to get off of them as they stimulate his nervous sys too much & gives him constant shaking (even in his sleep!). He tried pyscholoanylsis, but he is stubborn about it. I think celiac disease contributed to his depression.

[YankeeDB]

Debmidge, which anti-depressants did he try?

Also, have you looked into light therapy?

Is talk therapy a possibility?

Depression is SO treatable, it is a shame to suffer from this with all the knowledge and approaches we have now.

[Josephine]

Tom,

Looking back, I had symptoms of Celiac from early childhood but was only diagnosed at the age of 41. I missed a lot of time off school and work. I had a lot of trouble with bosses and co-workers thinking I was lazy because how else could anyone take that many sick days? It was really difficult. The doctors always said there was nothing wrong with me so I, along with everyone else, expected me to behave as a normal, healthy person.

Regards,

Josephine

[Josephine]

Debmidge,

I've read a few of your posts and I can really relate to what you've written about your & your husband's experiences with Celiac.

I was extremely ill for many years before a gastroenterologist tested me for Celiac (blood work & biopsy). I've been gluten-free since October 2002 and, although I am much better than I was, I still do not have a normal amount of energy and stamina.

When I was really sick and exhausted all the time, the doctors figured I must have been depressed because all of my blood work was normal (they didn't test me for Celiac). None of the doctors thought I needed psychotherapy; in fact, they often commented on my good attitude and strength of character. I spent three years taking various anti-depressants which didn't work and only made me more tired. When I was diagnosed with celiac disease, I stopped taking the anti-depressants and felt better. I haven't been depressed since then but, believe me, I have felt discouraged many times over my slooooooow recovery from a lifetime of illness.

I am not against anti-depressants for people who are depressed. I think these medications have helped a lot of people.

I haven't worked in six years. If anything were to happen to my husband, I couldn't support us.

Although many (or most?) people with Celiac seem to make a quick recovery, for others, including myself, the recovery process is slow. Tests done last September showed that I had no antibodies to gluten in my blood and my small intestine had healed completely. I am extremely strict with my diet. So why aren't I doing better and doing more? No one knows. But I've been sick most of my life and that takes a toll on the body. I aged a lot in my thirties and I tend to think that the aging didn't just affect my face.

I found that there was a real grieving process in the first year or more after diagnosis. I kept thinking, "I wuz robbed!" I felt really sad and ripped off. I lost my youth, my pride and my independence. I lost so much time and so many opportunities because this illness went undiagnosed for so long. It affected my education and my work. I, too, encountered cruel doctors and family members. I lost friends. One family member told me some baloney story about how she was severely anemic but still managed to hold down three jobs (she always had to one-up me if I mentioned being sick). Others told me I wasn't trying hard enough, all I needed was to get off my *** and exercise, I was a loser, etc. Doctors treated me as if I was neurotic, a hypochondriac, a liar, depressive, etc. My brother said mean things about me to his wife (in my presence) and they both laughed. This was after I had told them I was taking anti-depressants and using a light box because the doctors thought I was depressed. (This behavior was not out of character for my brother but it still hurt at the time.)

Being ill and dependent for years takes a lot out of a person and, for me and probably for your husband, it will take a while to recover. Even though I was relieved and grateful to finally know what was wrong with me, I still had a big adjustment period, not just in getting used to the hyper-vigilance required for the gluten-free diet but in the idea of having a chronic illness. I mentally reviewed all of my life and relived so many unhappy times in which I suffered needlessly.

If your husband decides to attend a support group or see a therapist, I hope he will be able to find one experienced in helping people with chronic illness. Although people with treated Celiac are usually eventually healthy, many have been extremely ill prior to diagnosis, and have also suffered emotionally, and that requires special care (in my opinion).

I wish all the best for you & your husband. You've been through **** and back and you should have better days ahead. There is hope.

Regards,

Josephine

[YankeeDB]

Josephine, have you considered other food sensitivities as the source of your ongoing fatigue? What about thyroid testing? Just a couple of thoughts.

[Josephine]

YankeeDB,

Thank you for your suggestions. I was diagnosed with Hashimoto's thyroiditis about 28 years ago and I've been on Synthroid ever since. Every time they are checked, my thyroid and vitamin and iron levels are fine. I've been on Losec for reflux for several months and that seems to be under control. My digestion seems to be fine. Do you think food sensitivities would cause fatigue as the only symptom?

I'm so sick of going to the doctor. She listens to me now that she knows I actually have something wrong with me but I don't want to push my luck. I hate the blank stare she used to give me when I'd complain of symptoms before diagnosis.

I have cysts on my ovaries and the ovaries are changing physiologically (that's what the doctor said). I have to go for more follow-up testing but it's not supposed to cause fatigue (unless it's cancer but they say they're confident it isn't). I'm still ovulating so I'm not menopausal yet. Something to look forward to. ; )

Thanks again.

Regards,

Josephine

[YankeeDB]

Josephine, I HAVE read that other food sensitivities can cause fatigue so you might want to look into this. Also, I wonder if a carnitine deficiency might be an issue here. Never give up--keep researching. There is always a new avenue to consider. It sounds like you are taking the best possible care of yourself--good for you!

[Josephine]

YankeeDB,

Thanks so much! I will definitely do some reading about it!

Regards,

Josephine

[debmidge]

My husband has had the shaking from:

Prozac, Zoloft, Serzone, Celexa, Paxil, Remeron, & one or two others I can't recall. At one point they added to the anti depressant Klonopin which is for seizures, which didn't work. All of the seretonin uptake and re-uptake based scripts do this to him.

We were at a neurologist this week and they prescribed Trazadone with Neurontin my concern with neurontin is that sometimes seizure meds have a permanent side effect of body shaking and since he is prone to this I am afraid for him to take this. I haven't investigated Neurontin in the Physican's Desk Reference as yet to see if the permanent shaking is a risk factor.

My husband has been dealing with depression for about 10 years. A lot of it is because he feels less than a man because he's not healthy nor the bread winner of the family. He has told me that I shouldn't have married him because I could have done better, etc. This disease has done a job to his self esteem and worth as a person. Between his own bad feelings and what people say about him (i.e., he can work with IBS, he's just lazy, etc.) he's got a diminished self worth. I have made sure that he remember I married him after he got sick, so I had a choice and in addition I make sure that all who know him and may have spoke disparagingly about him now know that he has a health problem a little more involving and serious that IBS/IBD that THEY have.

It's amazing to me how people like to pay the "one upmanship game" on how they too are as sick as you are. His sister likes to play that game with me and I dislike her for it. She has no children, hasn't worked in 30 years, they own their own home, each has their own new car, her husband supports her (of course) - her day is her own! And she has the gall to tell me that she's just as stressed out as I am! I work a FT job that does have a lot of stress - I have to make the $$ because my husb doesn't work. I come home from work to a person who has a serious, life changing illness - I don't have the time nor money to go to the salon, the pool or shopping like she does. I can barely afford our one bedrm apt. with one car that we share. I am on xanax and ambien for my stress. I have started cutting people from my life who play the "he isn't sick" or the "one upmanship" game; unfortuately I can't eliminate his only sibling.

Thank you for your help and caring.

[Josephine]

Debmidge,

I can really relate. Both of your experiences are so much like mine and my husband's. In time, as your husband's body recovers from the effects of long-term illness, he will feel better physically and he will be able to do some activities and hobbies that are interesting and rewarding to him.

I hope that he can tolerate the new medications and that they will help him feel better emotionally. Just prior to my diagnosis with Celiac, I was on Effexor, Wellbutrin and Remeron all at once and the addition of the Remeron was a huge mistake. I didn't shake but my legs and arms would jerk and twitch. It was really unpleasant. The Remeron gave me other, more serious, problems and I didn't take it for very long.

Kudos to you for working so hard and sticking by your husband when he was sick for so many years. My husband has done the same for me.

My being sick with undiagnosed Celiac cost us financially, too. We don't have a house, our car is horrible, and we're in debt up to our eyeballs.

I have to work really hard sometimes to focus on one day at a time and what I am able to do today. On a day when I am able to do the dishes or the laundry or some sewing, wow, that's a lot for me. I think of it as being in my own little sheltered workshop. (I think this reflects both my optimism and my discouragement at being "disabled" in a way.) I hope that my energy and stamina will continue to improve and I have no reason to think otherwise but it is a very slow process for me. I aged a lot in my thirties. This illness took a lot out of me because it was undiagnosed for 41 years. So, I focus on today and try not to think too far ahead into the future. Some days, that effort alone can take a lot of energy.

Take care.

Regards,

Josephine