Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

He Keeps Getting Sick! So Frustrated!

PrincessKitty

Recommended Posts

PrincessKitty Rookie
PrincessKitty
Posted

My husband was diagnosed with celiac two summers ago, via the blood test and an elimination diet. He never went for the biopsy (which I regret now as he wavers between believing he has and not). In October he decided that he didn't need to be gluten-free anymore and went on an all out splurge. :rolleyes: Beer, pizza, sandwiches. After about a month it finally caught up with him but for some reason he still doesn't fully believe he's Celiac (or at least has gluten intolerance). We believe he has DH on his scalp as well (he's gone to over a dozen derms with no diagnosis and the only thing that has improved the condition is going gluten-free).

Anyway, since Glutenfest 2010 we've had several incidences of him being glutened. He hasn't been as careful as he was when he was first dx'd. And, I have to admit, I got a little lazy myself. Our budget had us in a real squeeze so I started trying different products (I always checked the labels but I wasn't as diligent as I thought). Before he went gluten-free he used to get bronchitis every year that lasted for weeks. This past winter was the first one that he wasn't sick at all. He has been glutened at least every other week for a few months. And it's finally caught up to him where he has bronchitis again and just can't get rid of the celiac systems (constant bloating, diarehhea, pain and TERRIBLE moodiness).

I'm just not sure what to do with him. We have a celiac center here and I'm trying to get him in for the 1/2 day session (they do an eval and classes). He just has not accepted the fact that he has to be careful and be a "pain". He hates that he can't be "normal".

I'm just really frustrated with him. This illness has put a major strain on our marriage. His moodiness (from the celiac and due to his embarrassment from the DH) has really made it unpleasant to be around him. Has anyone had an experience like this? I'm so :( that he won't take care of himself!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


stephharjo Rookie
stephharjo
Posted

I had this problem with my husband, but it was with his diabetes. He was diagnosed at 19 and was not happy.HeI had all the proof right in front of him, but just couldn't except the diagnosis. It was really hard for him to change his diet as well. Unfortunately it took years of harping on him and reminding him of the damage he was causing to his body as well him actually experiencing a blocked bowel and eye sight changes to help him realize that the diabetes was affecting his entire body. He used to not even take his medication. He is type 2 and got to where he was having to take insulin as well. He is 28. We have just got him to where he doesn't have to take the shots because he is doing so well taking care of himself. Sometimes it takes the constant and gentle reminders of what can happen to their bodies if the diet is not followed as well as your love. I know it's a struggle I've been there, not with the celiac but I know it affects your entire system as well. I am just now finding out that I have gluten intolerance after many years of misdiagnosis. I have no choice to follow the diet though because if I get the slightest bit of gluten my entire intestines revolt and it takes days to recover. I hope that things start to look up for the both of you and that he finds it easier to except as times go by (but not too much time) also after I found I was gluten intolerant two weeks later I also found I was reacting to eggs, at first I thought I had ate something contaminated. Damage to his intestines can cause him to react to other foods. Ive read that once your body recovers most people are able to reintroduce them back into their diets with no I'll effects, not the gluten though of course. Best wishes to the both of you!

blueshabooMoon Apprentice
blueshabooMoon
Posted

My husband was diagnosed with celiac two summers ago, via the blood test and an elimination diet. He never went for the biopsy (which I regret now as he wavers between believing he has and not). In October he decided that he didn't need to be gluten-free anymore and went on an all out splurge. :rolleyes: Beer, pizza, sandwiches. After about a month it finally caught up with him but for some reason he still doesn't fully believe he's Celiac (or at least has gluten intolerance). We believe he has DH on his scalp as well (he's gone to over a dozen derms with no diagnosis and the only thing that has improved the condition is going gluten-free).

Anyway, since Glutenfest 2010 we've had several incidences of him being glutened. He hasn't been as careful as he was when he was first dx'd. And, I have to admit, I got a little lazy myself. Our budget had us in a real squeeze so I started trying different products (I always checked the labels but I wasn't as diligent as I thought). Before he went gluten-free he used to get bronchitis every year that lasted for weeks. This past winter was the first one that he wasn't sick at all. He has been glutened at least every other week for a few months. And it's finally caught up to him where he has bronchitis again and just can't get rid of the celiac systems (constant bloating, diarehhea, pain and TERRIBLE moodiness).

I'm just not sure what to do with him. We have a celiac center here and I'm trying to get him in for the 1/2 day session (they do an eval and classes). He just has not accepted the fact that he has to be careful and be a "pain". He hates that he can't be "normal".

I'm just really frustrated with him. This illness has put a major strain on our marriage. His moodiness (from the celiac and due to his embarrassment from the DH) has really made it unpleasant to be around him. Has anyone had an experience like this? I'm so :( that he won't take care of himself!

Wow, a Celiac Center, Where at? If only we could all be so lucky to have a celiac center,Terri

Juliebove Rising Star
Juliebove
Posted

That sounds soooo familiar! My mom doesn't have celiac but she does have food allergies and is supposed to avoid wheat and nightshades because of her arthritis. She has told us this countless times. Sometimes she has even told us not to let her eat these things. But then when we do say something she gets a bad attitude and says it is none of our business.

Time and time again she eats the things she shouldn't and then complains and wants sympathy because she is sick. And she always doesn't know why she is sick! It makes us really angry because we are so careful with our diets. She also tends to make fun of us for the way that we eat and says that eating the allergens won't hurt us. Uh huh.

In her case I guess I have to cut her some slack because she is elderly and I suppose she might be forgetting what she is allergic to. Really hard to say.

PrincessKitty Rookie
PrincessKitty
Posted
  • Author

Thank you everyone! He also has a hard time understanding that it takes time for his body to heal after being beat-up with gluten for 30+ years! He did agree to go to the celiac center and we are signed up for 8/22 (BTW we are in Pittsburgh and the celiac center is part of West Penn Allegheny Hospital). So I'm excited about that. I'm going to spend the weekend cleaning out the kitchen again and going through our cabinets. Thanks for the support! :)

viviendoparajesus Apprentice
viviendoparajesus
Posted

the biopsy could have had a false negative so even that might not have been a total help. also cannot change the past. seems to me the bigger issue is his acceptance especially since there are limitations to all the tests. gluten seems so addictive people going on splurges like a drug user goes on a binge or has a relapse. and having withdrawals when you go off it. perhaps thinking about it that way will help you in helping him.

you know him best does he need some tough love and confrontation or does he need love care and concern in a softer approach. even though i might be hurt or upset about my sucky health i appreciate my loved ones observations because they can notice things i miss and ultimately it can help me find the road to better health. after you all talk that might be great to go to the celiac center for some ed, support, and evaluations.

there is so much that goes into eating selecting food, cooking, eating. so i think it takes some care and planning for anyone. it is just a question of what one chooses and why. medical/disease, religious, personal preference, practical, financial, etc. i can relate i feel like a pain sometimes but i have to take care of myself and i try to be real gentle. often times people feel bad they do not see me as a pain they love me and want to have food for me to enjoy. i do not see myself as abnormal. my body does not want gluten so that is what is normal and healthy for me. i see it as a poor person environment fit to live in a gluten based society. i am not abnormal i am me and i am wonderful the way i am. in addition, from what i understand the human body was not meant to digest gluten it does not seem natural. i feel a little blessed to know it is not in my best interest to eat it. i wish i had known years ago. wish i never had any gluten.

since he still is having gluten it can cause him to be irritable, illogical, and quite unpleasant to be around i know i was horrible before i got diagnosed and off gluten.

perhaps seeing a counselor would help since it would be a neutral third party who could help you communicate and work through this difficult issue.

has he read some people's stories. i never was properly diagnosed but from what i understand i think i had dh and it would effect my scalp. i also had horrible warts and headaches and problems going the bathroom. i went off gluten and it was a complete 360 and i felt so much better.

what are his feelings and thoughts? what stops him from staying gluten-free? what makes him binge? what makes him want to go gluten-free?

best wishes!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,871
    • Most Online (within 30 mins)
      7,748
    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.