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

Sad, Frustrated, Need Support

argybargy

By argybargy
in Coping with Celiac Disease

Recommended Posts

argybargy Newbie
argybargy
Posted
  • Author

I went to my doctor for my usual annual checkup, and he said that my liver enzymes were elevated, which could have been about 40 different things, so we started testing for all of them. At test #5 or 6, he hit gluten antibodies, so he sent me for a biopsy. Biopsy came up positive.

 

But all either my GP or the GE could tell me was that I "might" get really sick years down the road.

 

I have a question.....

 

If you had no visible symptoms....why were you tested for Celiac? From everything I've read and what I've gone through personally this isn't a random test that doctors just throw in to see if you have it.

Were there other things that you were experiencing at the time that made the doctor question the possibility of you having it? Not everyone has digestive issues. I'm just curious as to the reason behind the testing in the first place.

 

 

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

Celiac.com Sponsor (A8-M):


argybargy Newbie
argybargy
Posted
  • Author

I can't do this. I simply can't. I have a full time job. I would basically have to not eat in our house. 

 

I mean, I guess I *can* not eat in our house, but how depressing.

 

 

 

I am sorry you are getting no support and there is so much risk of cc for you. If your family isn't being careful, you mught have to make the house gluten-free, and do all the grocery shopping. Get rid of all contaminated spices and cooking/baking supplies, soups and boullions that hav gluten, replace bread and past with gluten-free varieties (Udi's and Silverhills isn't bad), and stock up on yams, potatoes, and rice.  There is no reason in the world that your family needs to eat processed carbs anyways - it is not required for life - so if they won't be careful to keep you healthy, then take all gluten away.

argybargy Newbie
argybargy
Posted
  • Author

No actual symptoms. A liver enzyme test result. That's part of why this is so hard to deal with. It's all numbers on charts.

 

Why did a doc test you for Celiac? What symptoms or other illness caused you to be tested?

argybargy Newbie
argybargy
Posted
  • Author

Thanks. This is really helpful. I think probably I need to go to the GI guy again and find out how to present this so that she takes it seriously. Also, I think she is now convinced the gluten free diet is making me sick, because all of these symptoms have only appeared after I went on it! But as another one of my friends said, it's the whole digestive process that's freaking out.

 

Our kitchen is a giant explosion of crumbs.

 

Re: Squeeze ... Yeah, and I have all of their albums :) Especially the old stuff! I guess you could say I feel like I'm really up the junction ...

 

argybargy?  another squeeze fan????!!!!  yay!  it's cool to be a cat-at-at-at   ;)  now i must dig through my compact disks....

 

(starving to death, husband whips out a sandwich my brother bought :(  "sreee hours l8tere"  my grilled cheese is still too hot to cut  <_<  what the french.  vanilla....)

 

ok.  we have a shared household - it was touch and go there for a minute.  plenty of explaining about cc <o, my gosh.  you should have seen everybody's jaw drop and the eyes rolling when i told them they had to take out their sandwich meat before they came in contact with any gluten bread!!  they were like YOU HAVE GOT TO BE KIDDING.  nope..  dead serious.  we worked around it, (doesn't work to share, too much forgetting and worrying 'is it good?  arghhhh!!' )   and figured out that i just should have MY OWN packages of meats and cheeses.  i am 3 years in, i don't know how i would have been able to keep trying without my husband's help.  even when i forget, he reminds me:  you should take some (whatever) out for yourself before we put it out for everybody to cc.  

bartfull Rising Star
bartfull
Posted

You CAN do this. And you HAVE TO. If your family won't cooperate you need to get a plastic tote to keep your own dishes and pans in. That way they won't use them. And if you have to get a small one for the fridge to keep your butter, condiments and other foods in, then do it. MAYBE if they see how hard they are making it for you they will get an attack of conscience and stop trying to sabotage you.

mommy2krj Explorer
mommy2krj
Posted

I went to my doctor for my usual annual checkup, and he said that my liver enzymes were elevated, which could have been about 40 different things, so we started testing for all of them. At test #5 or 6, he hit gluten antibodies, so he sent me for a biopsy. Biopsy came up positive.

 

But all either my GP or the GE could tell me was that I "might" get really sick years down the road.

Thank you for the explanation. We started on this road because my 6 year old had a stomach ache. A stomach ache that's lasted for over 6 months! :( Celiac was not on my radar either.

We went gluten free as a household. My husband will eat any gluteny food he wants when he's at work....though I think he would benefit greatly if he went gluten free wholly. My 18 year old daughter has turned up her nose at anything that is normally full of gluten that I have tried making gluten-free. My 15 year old, extremely picky son? He has almost fully embraced it! Just not the veggies. Can't get him to eat veggies for nothing! Gah!

I am finding I have a lot more energy and ability to focus without the gluten. We all were tested with blood work (though not full panels) and we all tested negative except the little guy.

I told everyone we were going gluten-free as a house hold because I couldn't wrap my brain around trying to keep the 6 year old from cross contamination issues. Still having problems with NEIGHBOR kids giving him food. And his sister (who is typically a smart girl and who has a friend that has a sibling with the same issues!) took him to Taco Bell AND McD's yesterday (though he did at least eat a cheeseburger without the bun) and now I have a weepy, crabby 6 year old on my hands that did nothing but cry at swimming lessons today. *sigh*

 

Hugs to you. Maybe go to the library and check out some good books on Celiac (wish I could think of the good ones off the top of my head but I was a bit overwhelmed when I did all my reading) and ask your wife to read them?

 

How old are the kids? Are they more willing to understand that you have an illness to take care of? Old enough to explain to them that leaving this unchecked leads to higher instances of cancer (my teens would understand...but it would scare the crap out of my 6 yr old).

How very frustrating. Maybe have your wife come here and read the Newbie thread?

notme Experienced
notme
Posted

Thanks. This is really helpful. I think probably I need to go to the GI guy again and find out how to present this so that she takes it seriously. Also, I think she is now convinced the gluten free diet is making me sick, because all of these symptoms have only appeared after I went on it! But as another one of my friends said, it's the whole digestive process that's freaking out.

 

Our kitchen is a giant explosion of crumbs.

 

Re: Squeeze ... Yeah, and I have all of their albums :) Especially the old stuff! I guess you could say I feel like I'm really up the junction ...

yep, it's probably your digestive tract adjusting to your new 'normal' - hopefully it will settle down soon.  in the beginning, you can have gluten withdrawal, and most of us 'grieve' for our old/"illegal" foods and lifestyle.  i'm so sorry you're having such a rough time :(  try not to let the big picture overwhelm you.  when it comes to living gluten free, this is probably your best resource.  when i was first diagnosed, they said:  congratulations, you have celiac, eat a gluten-free diet, and have a good life.  i kept asking to see a dietician or a nutritionist but i couldn't get an appt for like 3 wks, so my husband found this site and i was able, with the experience and advice of all the people on this forum, to get my act together.  one day at a time, and that's hard to do when you're panicked, but it's true.  you can do it, your family will adjust.  we did it by flying by the seat of our pants at times - YES, I KNOW ABOUT THE CRUMB EXPLOSIONS lolz my grandboys were staying with us at the time and i was constantly "DID YOU TOUCH THIS??"  i don't know why i even ever asked them because i didn't believe them anyway hahahaaa  :D

 

re:  squeeze - I AM SO JELLY i love all the old stuff, too - i used to have a pretty good collection of their music - on cassette lolz.  now i only have a few songs - def not enough!   <_<   i stole them off the interwebs before you could get arrested for it.  i am glad you posted i should look for some stuff on itunes.  (so thanks for being sick, it works out so well for ME <JUST KIDDING!!  trying to make you giggle)  

seriously, we can help you walk through this, hopefully - it may not feel like it now, but it does get easier.  celiac is systemic, which means it affects your whole body.  you may be amazed at what clears up :)  hang in there, buddy :)  

 

don't pull that trigger!  don't shooot that singer..............;)

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

If my kitchen had "gluten crumbs everywhere," I would set up a gluten free kitchen somewhere else in the house or outside. A table works as a countertop.  A huge pot is my sink.  Then, all it takes is an electric plug in skillet and some utensils.   The skillet functions best as a fry pan, but on occasion I have baked potatoes in there. To do that I cover the pan with a lid and put the potatoes on a small cooling rack A crock pot can also be used.  You can get it ready before leaving for work and come home to a cooked dinner.  I also use this quick set up arrangement if I travel.  I keep wanting to take a picture of this, because it really is easy to do. 

AlwaysLearning Collaborator
AlwaysLearning
Posted

I felt worse after going gluten free as well, and I am certain I'm not being cross contaminated. For me, it was vitamin deficiencies that were to blame. Get those tested ASAP (easy from just a blood test). Just getting some of them partially back on track has made me feel much better.

When it comes to the family, I think it is time for THEM to make some changes as well. There is absolutely nothing stopping your wife and kids from eating a gluten-free meal every once in a while. And any meal that contains rice or potatoes for starches is a great starting point.

Though it still may take you some time to figure out which brands of premade foods are tasty enough to keep them from balking, they are out there. For instance, you could start only having gluten-free pasta in the house. I personally like bionaturae brand pasta, and I doubt they'd pass up a gluten-free brownie if it were put in front of them. If you're making foods for yourself that are more tempting than what they are eating, they are sure to start to get a little jealous and want to join you.

All of that said, I'll admit that since going gluten free, my mood isn't all that great. Where other people say that it makes them feel more calm, I would use the word "dulled". I think more exercise may be the solution for that for me.

It does sound as if this is going to be tough going for you, at least in the short term until things have settled into a routine. Perhaps some more knowledge about the horrible problems that can be caused by malabsorption and the autoimmune attacks can help motivate you and your wife. And being here on the forum is a great place to start. I swear I learn something new every time I stop by!

mommy2krj Explorer
mommy2krj
Posted

Oh yes...the brownies! My goodness...I made a batch of brownies from a gluten free mix for my little guy for at his sister's graduation party. They were gone in a flash...I never even got to try one! So, while I, personally, can't tell you if they're any good....my brother and several teenagers and other people at the graduation party said the brownies were awesome! So, I agree...make them jealous. :) When they taste the brownies and they're just as good as the "real" thing....maybe they'll realize it isn't so bad. Now...I need to make brownies again so I can have one!

 

I had over half a cake left from the graduation party. From our local bakery that everyone loves. They ate my brownies instead. Hmmm....I made the night for a couple teenage boys when I sent them home with all the extra cake and cupcakes. :)

cyclinglady Grand Master
cyclinglady
Posted

Oh yes...the brownies! My goodness...I made a batch of brownies from a gluten free mix for my little guy for at his sister's graduation party. They were gone in a flash...I never even got to try one! So, while I, personally, can't tell you if they're any good....my brother and several teenagers and other people at the graduation party said the brownies were awesome! So, I agree...make them jealous. :) When they taste the brownies and they're just as good as the "real" thing....maybe they'll realize it isn't so bad. Now...I need to make brownies again so I can have one!

 

I had over half a cake left from the graduation party. From our local bakery that everyone loves. They ate my brownies instead. Hmmm....I made the night for a couple teenage boys when I sent them home with all the extra cake and cupcakes. :)

Hey, Betty Crocker gluten-free Mix was rated #1 over all mixes here:

 

Open Original Shared Link

 

After I read this article in July on Yahoo, there was a run on this Betty Crocker Mix.  It's really good and handy to be able to get it at a regular grocery store and perfect for those who aren't into serious baking!

mommy2krj Explorer
mommy2krj
Posted

Hey, Betty Crocker gluten-free Mix was rated #1 over all mixes here:

 

Open Original Shared Link

 

After I read this article in July on Yahoo, there was a run on this Betty Crocker Mix.  It's really good and handy to be able to get it at a regular grocery store and perfect for those who aren't into serious baking!

:) Good to know, thanks! I believe the one I used was the Namaste brand. Even the licking of the mixer/bowl was wonderful! Which is all I got. I'm curious to know what the end product tasted like so I will have to get some more. I will also have to try the Betty Crocker one...it's probably cheaper. :)

bartfull Rising Star
bartfull
Posted

It's been my experience that anything chocolate works better than other flavors, not because it's chocolate, but for some reason the texture comes out better.

dotsdots Newbie
dotsdots
Posted

Lots of good comments.

 

So sorry that you are having a hard time. But the good news is, you are preventing more damage by going gluten free whether you can see it or not. You are preventing cancer, kidney failure, etc., etc. You are giving yourself a chance to live a normal life span.

 

Your kidney stones could conceivably continue to exit your body for a while. They are already in your kidneys from when your body was still taking in gluten and couldn't expel the calcium properly through your stools so it crystallized in your kidneys. But you won't be making any more. Just getting rid of the ones that are already there and haven't moved out yet. So even though it doesn't look like progress, it is. There's more going on than meets the eye.

 

I'm praying your wife will take a look at the literature and realize how dangerous this disease can be if gluten is still consumed. Good luck to you and don't give up!!!

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.