30 Years W/celiac & I'm Still Coping!

[heymom45]

I was 13 years old, a sophomore in hs, still waiting for "my growth spurt" (& my first period!). I weighed 68 lbs! After weeks of "iron fortification" in the form of chewable rx tablets & raw eggs beaten into glasses of milk, my iron levels didn't come up so I was admitted to the hospital & tested, & tested, & tested. Finally, the results came back "non-tropical celiac sprue disease".

At 13, you are the center of the universe, right?? So for a little while, maybe it was kind of cool. I even wrote a paper, "WHAT IS CELIAC SPRUE DISEASE?" ...how could the teacher dispute my research on what was (at that time) considered a "rare disease"?? (pretty smart, huh??)  But that wore off pretty quick considering the long list of foods I was NOT to eat!!

And that has pretty much how I have lived since... "NOT" eating gluten. I've gone to prom, graduated, married (once, 26 years so far!!) and had 6 children (4th is about to graduate high school, leaving 6 & 8 year old boys in the nest!). I've operated a daycare business & driven a school bus or two along the way. When it came to eating, I just ate whatever "gluten-free" was available, or I would eat something "later".

I worried the kids could have celiac. But drs always said no symptoms, no worries. So far, none of my kids were diagnosed until they were adults. My eldest daughter was diagnosed at an ER, around age 23, when complaining of abdominal pain & mentioning that Mom had celiac. Child #2, at age 19, was suffering migraines & panic attacks. She's 21 now, & still no celiac. Child#4, now 18 years old, has complained of non-specific stomach pain/cramps. No dr ever considered celiac because she was otherwise healthy. A few months ago, she decided to go gluten-free. After only 3-4 days she felt remarkably better!! She talked w/her new dr about celiac history. Now she has to go back to eating gluten so they can do the test!!  Life at 18 is busy, so she's not following up on the test right now.  Lastly, child #5 has had sleep/anxiety issues since 18months. He was diagnosed with ADD, but his therapist & I don't agree. I'm not pushing the celiac idea until next week when we meet with new pediatrician. His old one kept meeting my concerns about his health with "If you would just give him the ADD meds it would solve all those problems."

As you see, my life has been full!! amen.  But in 2007 I had a blood clot in my leg & lungs, following the emergency C-section of child #6. And in 2012 drs found a hemorrhage in my brainstem (another "rare disorder"!!! lol) My health is once again good, but I think I need to make it more important. Now that the blood clots are history & the bleeding is all gone away, I'm left with celiac. Ugh!  It's messes with meal plans, social events... it even messes with church!! (I'm a catholic!)  It may sound crazy, but after all these years I need help with this!!  sometimes I just want a stack of Oreos and a cold glass of milk, or 3 bowls of Cheerios... I've earned it, haven't I??  :s

 

[1desperateladysaved]

I am glad you got diagnosed early and have lived with it!  I also am a mother.  My biological children number five and we have 2 adopted children.  I got my diagnosis 20 months back after 30+ years of symptoms.  I am leery of my children developing it also.  There are possible symptoms, but the ones  tested were negative.  My oldest is 25 and the youngest is 9. They should never have to suffer so long!

 

My functional medicine nurse uses a gluten free diet to help ADD.  My little brother had troubles and had his growth possibly stunted by the meds.  He was helped by "The Feingold Diet for Hyperactive Children."  It helped him immensely and I wrote my high school research paper on that diet.

 

Thankfully, I learned to cook and garden over the years.  Making everything from scratch didn't shock me.

 

D

 

I have trouble at Church also with both the bread and the cup!  We also have had a number of potlucks which are difficult for me.  Nobody (but me) seems to care to much if I bring my own. 

 

I have never turned to forum or support group, but this disease drove me to it.  I just had to find someone that understood what I am going to.  When I began it seemed incredible how many times someone had been there, or how many times that others had the same problems.  It is working out, but sometimes I would like to wake up from the nightmare of celiac recovery.  I have had many days worth having now, and I learned a whole bunch of things good for me and my family over the years.

 

I wish you well on your journey!  I sent you a quick personal message, I hope you can find it.

[heymom45]

1desperateladysaved~ I'm happy for you that you are feeling much better!! I went to dr for first time in yrs last month. After the life/death crises I thought it might be good to know exactly where I am healthwise!! I went to a GI dr to see if what I knew of celiac might be outdated. When he took my health history, he asked how I knew I have celiac. It turns out a lot of people self-diagnose this one!!  I told him my story & he was wowed. LOL. He told me there are not many people my age that were diagnosed so young.  I still laugh when I think about that conversation!!

It turns out that, other than the testing methods now available, there's nothing new to tell about celiac disease!! (phew... no more homework!! lol)  He would like to do some sort of test to see how my intestines are, but there would be no previous results to compare (for baseline).... Unless I go OFF the gluten free diet for a month or so, then do the test (to get a better baseline). I looked at him and said "THAT'S not happening!". I've consumed gluten (intentionally) here and there with no BIG effects. But for the first time in MANY years I consumed gluten (like KFC chicken, gravy, creamed soups, box cereals) for 2-3 day stretches over a couple weeks... NEVER AGAIN. My gut suffered for days. I understand I've reached the half-life of all that, but it just was NOT worth it.

I've never needed support either.... until now. I guess with the kids growing up I finally have myself to think about. Funny how hard that is....  

[ravenwoodglass]

Don't have much time but wanted to say welcome. You have found a very supportive and informative place to vent and to learn.

You have 'earned' the right to a nice treat so do check out the recipe board for ideas on ones that will be safe and comforting. Chocolate works for me but I still need to find more self control as it isn't unusual for me to consume 1/2 bag of hersey kisses in one sitting.  

[kareng]

1desperateladysaved~ I'm happy for you that you are feeling much better!! I went to dr for first time in yrs last month. After the life/death crises I thought it might be good to know exactly where I am healthwise!! I went to a GI dr to see if what I knew of celiac might be outdated. When he took my health history, he asked how I knew I have celiac. It turns out a lot of people self-diagnose this one!! I told him my story & he was wowed. LOL. He told me there are not many people my age that were diagnosed so young. I still laugh when I think about that conversation!!

It turns out that, other than the testing methods now available, there's nothing new to tell about celiac disease!! (phew... no more homework!! lol) He would like to do some sort of test to see how my intestines are, but there would be no previous results to compare (for baseline).... Unless I go OFF the gluten free diet for a month or so, then do the test (to get a better baseline). I looked at him and said "THAT'S not happening!". I've consumed gluten (intentionally) here and there with no BIG effects. But for the first time in MANY years I consumed gluten (like KFC chicken, gravy, creamed soups, box cereals) for 2-3 day stretches over a couple weeks... NEVER AGAIN. My gut suffered for days. I understand I've reached the half-life of all that, but it just was NOT worth it.

I've never needed support either.... until now. I guess with the kids growing up I finally have myself to think about. Funny how hard that is....

Currently,the recommendation for follow- up with Celiacs who are having no issues, is a yearly blood test. You could have an endo to see if you still have damage but there is no reason to do a gluten challenge.

Open Original Shared Link

How often should follow-up testing occur?

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur 3-6 months after the diagnosis, and the second should occur after 1 year on a gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis. We recommend checking both tTG and DGP (Deamidated gliadin peptides) at each screening.

[surviormom]

I was 13 years old, a sophomore in hs, still waiting for "my growth spurt" (& my first period!). I weighed 68 lbs! After weeks of "iron fortification" in the form of chewable rx tablets & raw eggs beaten into glasses of milk, my iron levels didn't come up so I was admitted to the hospital & tested, & tested, & tested. Finally, the results came back "non-tropical celiac sprue disease".

At 13, you are the center of the universe, right?? So for a little while, maybe it was kind of cool. I even wrote a paper, "WHAT IS CELIAC SPRUE DISEASE?" ...how could the teacher dispute my research on what was (at that time) considered a "rare disease"?? (pretty smart, huh??)  But that wore off pretty quick considering the long list of foods I was NOT to eat!!

And that has pretty much how I have lived since... "NOT" eating gluten. I've gone to prom, graduated, married (once, 26 years so far!!) and had 6 children (4th is about to graduate high school, leaving 6 & 8 year old boys in the nest!). I've operated a daycare business & driven a school bus or two along the way. When it came to eating, I just ate whatever "gluten-free" was available, or I would eat something "later".

I worried the kids could have celiac. But drs always said no symptoms, no worries. So far, none of my kids were diagnosed until they were adults. My eldest daughter was diagnosed at an ER, around age 23, when complaining of abdominal pain & mentioning that Mom had celiac. Child #2, at age 19, was suffering migraines & panic attacks. She's 21 now, & still no celiac. Child#4, now 18 years old, has complained of non-specific stomach pain/cramps. No dr ever considered celiac because she was otherwise healthy. A few months ago, she decided to go gluten-free. After only 3-4 days she felt remarkably better!! She talked w/her new dr about celiac history. Now she has to go back to eating gluten so they can do the test!!  Life at 18 is busy, so she's not following up on the test right now.  Lastly, child #5 has had sleep/anxiety issues since 18months. He was diagnosed with ADD, but his therapist & I don't agree. I'm not pushing the celiac idea until next week when we meet with new pediatrician. His old one kept meeting my concerns about his health with "If you would just give him the ADD meds it would solve all those problems."

As you see, my life has been full!! amen.  But in 2007 I had a blood clot in my leg & lungs, following the emergency C-section of child #6. And in 2012 drs found a hemorrhage in my brainstem (another "rare disorder"!!! lol) My health is once again good, but I think I need to make it more important. Now that the blood clots are history & the bleeding is all gone away, I'm left with celiac. Ugh!  It's messes with meal plans, social events... it even messes with church!! (I'm a catholic!)  It may sound crazy, but after all these years I need help with this!!  sometimes I just want a stack of Oreos and a cold glass of milk, or 3 bowls of Cheerios... I've earned it, haven't I??  :s

How do you handle church?  I am catholic as well, a Eucharistic Minister, and do not want to stop, keep telling myself such a small amount cannot hurt since I am so careful in every other way.  I have given up so much, yet healing seems so slow.  

[heymom45]

surviormom~ 

 

I'm catholic & strong in my faith. I wish, for me, that I could settle on a decision about this that satisfied BOTH my head AND my heart.

 

I've heard this discussed briefly on catholic radio. It is acceptable to take of the cup, without the host. You are still receiving full communion. But some w/celiac would add that the cup could be contaminated by the priest (as he handles the host) or by communicants receiving both.

 

But MY heart wrestles with the faith side of this: In receiving the bread and the wine, we accept (believe) this is NOT bread and wine, but the actual body and blood of Christ (according to the catechism). If in receiving, we TRULY believe this..... then what's gluten got to do with anything??  I've wrestled with this same question when the churches put hand sanitizer on the altar, too.  My faith tells me that the body of Christ would not pass sickness on to another.  After all, he healed lepers... he didn't spread the disease!

 

I guess we should pray.....  (and maybe invite Father over for coffee & discussion?)

[MGR]

Dear heymom45,

Here is a fab recipe for gluten-free brownies from Scotland to cheer you up... If I was were you are I would bring them round to yours personally!!

500g ground almond flower

6 eggs

250g sugar

150g melted butter

Two bars of dark (70% upwards) gluten-free chocolate melted in a container on top of boiling water

Beat the eggs and mix sugar, butter, flower and chocolate together - spread on a shallow baking tray. Beke in the oven at 180c for about 45 minutes, cut into squares - eat!!

I also miss Oreos very much..... But here is a good substitute,

What you say about yourself at 13 reminds me of my own daughters.... My younger one is 12 now and still only weighs 33kg and often complains of tummy ache...

[Pegleg84]

Welcome to the forum!

 

Wow, you were very very lucky to have been diagnosed so young, especially back when it was a relatively unknown "rare" disease. You've had 30 years to prevent many of the horrible complications that can come with undiagnosed Celiac. of course, it's a life-long thing. No gluten EVER forever! I'm not surprised most of your children have developed it. Anyone who hasn't been diagnosed yet ought to be tested periodically to see if they might have it too. Not all Celiacs show symptoms, and if it's caught early, they can avoid suffering through it.

 

I'm not Catholic (and no longer Christian), but I feel for those who can't participate safely in their most important ritual. Unfortunately a little can do harm, and it's a shame that the church won't accept that the health of their followers is more important than following doctrine to the letter. Many non-Catholic churches are offering gluten-free bread (depending on how vocal those who need it happen to be. My mom has been quite active in her congregation) where needed, so hopefully the Catholic church will soften its stance eventually.

 

Anyway, I hope we can help you get through this. I think everyone needs a bit of a refresher every so often, and always needs support of those who know what they're going through, so you've come to the right place.

[mbrookes]

I am Episcopalian and, as far as I know, the only Celiac in the congregation. After talking to my priest, the church now provides me a gluten free wafer served from a separate receptacle. I do not drink the wine, due to the almost certainty of cross contamination. I understand that there is a real problem if you are Catholic, but I would urge any others to talk to their clergy person about providing gluten free host. I am back to receiving communion after 6 years without.

[heymom45]

MGR~ this sounds delicious!! I love dark chocolate. As soon as my motivation returns, I will be exploring new gluten-free recipes. I am in IL, USA and we are in a deep freeze at -30 F.  I treated kids to gluten-free peanut butter cookies when they returned from school today!  mmmmmmmm...

[heymom45]

mbrooks~ some days our faith is all we have to keep us going. so do what u can to hang on to it!!

[MGR]

MGR~ this sounds delicious!! I love dark chocolate. As soon as my motivation returns, I will be exploring new gluten-free recipes. I am in IL, USA and we are in a deep freeze at -30 F.  I treated kids to gluten-free peanut butter cookies when they returned from school today!  mmmmmmmm...

Not sure how Fahrenheit works... But it sounds cold... We're having a most mild winter.... It rains a lot and it's often very windy down from the Highlands, but it is not as cold as it should be- this means that it will probably snow in April- May !!

[heymom45]

LOL!!  I will have as much challenge converting your metric weights in the recipe as you will with the temps!! 

[surviormom]

surviormom~ 

 

I'm catholic & strong in my faith. I wish, for me, that I could settle on a decision about this that satisfied BOTH my head AND my heart.

 

I've heard this discussed briefly on catholic radio. It is acceptable to take of the cup, without the host. You are still receiving full communion. But some w/celiac would add that the cup could be contaminated by the priest (as he handles the host) or by communicants receiving both.

 

But MY heart wrestles with the faith side of this: In receiving the bread and the wine, we accept (believe) this is NOT bread and wine, but the actual body and blood of Christ (according to the catechism). If in receiving, we TRULY believe this..... then what's gluten got to do with anything??  I've wrestled with this same question when the churches put hand sanitizer on the altar, too.  My faith tells me that the body of Christ would not pass sickness on to another.  After all, he healed lepers... he didn't spread the disease!

 

I guess we should pray.....  (and maybe invite Father over for coffee & discussion?)

And that is why I still do it.  Prayer, tells me its ok.  Yet, I still am not well, it takes so long to heal.

 

I think I need to totally eliminate eating out, my poor husband.  As much as restaurants are learning to be safer, I think they are still making me sick.  I take a 2 steps forward and 3 back.  I was great until Thanksgiving.  Now I am bloated, gained 15 pounds, and my fingernails have all split again.  Everything that came in the house was safe, it comes down to restaurants, or Mass.  I trust God.  I do not trust the restaurants.

 

But, yes, I agree with you, and that is why I still do it, and I wrestle with it and pray over it.  We have to trust God on this one. 

 

Thank you for you help, it is nice to hear from someone else that understands.  

[surviormom]

Dear heymom45,

Here is a fab recipe for gluten-free brownies from Scotland to cheer you up... If I was were you are I would bring them round to yours personally!!

500g ground almond flower

6 eggs

250g sugar

150g melted butter

Two bars of dark (70% upwards) gluten-free chocolate melted in a container on top of boiling water

Beat the eggs and mix sugar, butter, flower and chocolate together - spread on a shallow baking tray. Beke in the oven at 180c for about 45 minutes, cut into squares - eat!!

I also miss Oreos very much..... But here is a good substitute,

What you say about yourself at 13 reminds me of my own daughters.... My younger one is 12 now and still only weighs 33kg and often complains of tummy ache...

That sounds good, I have to convert it and try it.

[surviormom]

MGR~ this sounds delicious!! I love dark chocolate. As soon as my motivation returns, I will be exploring new gluten-free recipes. I am in IL, USA and we are in a deep freeze at -30 F.  I treated kids to gluten-free peanut butter cookies when they returned from school today!  mmmmmmmm...

I am cold today too, but I will not tell you the temp, you would laugh.  You are really cold.  I am planning brownies today but I have to convert that recipe first.  

[MGR]

No need ladies, here it is converted to imperial measurements.... ( according to my husbands grannie 's old scales)

Approximately: 18 ounces of flour

6 ounces of butter

9 ounces of sugar

6 eggs

2 tablets of chocolate

( one swig of whisky for the cold...)

I was bragging yesterday about how mild it had been here, it is ansolutely freeeeezzzinng today!!! Wind from the North and sleet,

Enjoy

[heymom45]

...maybe double they whiskey in case of extreme cold!!!  LOL!! 

[MGR]

Ha, ha, ha, cheers to you!!

[surviormom]

No need ladies, here it is converted to imperial measurements.... ( according to my husbands grannie 's old scales)

Approximately: 18 ounces of flour

6 ounces of butter

9 ounces of sugar

6 eggs

2 tablets of chocolate

( one swig of whisky for the cold...)

I was bragging yesterday about how mild it had been here, it is ansolutely freeeeezzzinng today!!! Wind from the North and sleet,

Enjoy

You are sweet!  Thank you!  They are delicious!

 

Yeah, I was cold today too, no sleet though, so I better be quiet.

[KCG91]

MGR they are in the oven as I type! The batter tasted great

[heymom45]

your welcome......

[MGR]

MGR they are in the oven as I type! The batter tasted great

Ah, I am glad you like them- so easy, so quick to make and a great fix! And no tummy ache!! I make up a batch and put them in an airtight container, take them to work, to a friend's house....