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

Oh The Guilt...

luvs2eat

Recommended Posts

luvs2eat Collaborator
luvs2eat
Posted

My middle daughter is having an endoscopy tomorrow... her bloodwork was inconclusive... altho from her symptoms, I'm certain she's a Celiac.

Of all the things to pass on to my kids!!

One got my acne and fibrocystic boobs, one got my tendency toward pilonidal cysts, and the one who loves to bake bread, just like her mother, gets the Celiac. I was really hoping the dilution of their father's Russian/Polish blood might spare them.

How is it that my symptoms didn't show themselves till I was 49 and my daughter is only 25??

I'm sort of going thru the same anguish I did when I was diagnosed 3 years ago!!

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

Celiac.com Sponsor (A8-M):


Guest katzmeow21
Guest katzmeow21
Posted
My middle daughter is having an endoscopy tomorrow... her bloodwork was inconclusive... altho from her symptoms, I'm certain she's a Celiac.

Of all the things to pass on to my kids!!

One got my acne and fibrocystic boobs, one got my tendency toward pilonidal cysts, and the one who loves to bake bread, just like her mother, gets the Celiac. I was really hoping the dilution of their father's Russian/Polish blood might spare them.

How is it that my symptoms didn't show themselves till I was 49 and my daughter is only 25??

I'm sort of going thru the same anguish I did when I was diagnosed 3 years ago!!

<{POST_SNAPBACK}>

\

I hear where you are coming from on that one. I was just diagnosed 2 weeks ago and I am 50. My children (2 boys ) I believe they both may have it and will get tested as soon as I get back from vacation... They actually have had symptoms of diarhea, nausea on /off for years, especially the oldest. Actually since the age of 2. I had no clue all these years it could be celiac. I was told by docs IBS and we never looked back.... till now :unsure: I never had anything but constipation all my life with a lot of anxiety kind of stuff and fatigue and then I started getting this weird muscle twitching in my legs, arms, torso on/off and weakness in my legs and arms on/off with achiness in wrists and heals. Also kind of a burning on/off in hands and feet when rubbed the wrong way or too much pressure. Not long lasting and comes and goes. It feels inflamed.. anyway

but no doctor until recently delved down deep enough. I am curious as to what type of symptoms led to your diagnosis .

luvs2eat Collaborator
luvs2eat
Posted
  • Author

My only real symptom was diarrhea (foul smelling and with undigested fat...sorry to be graphic) ... unrelenting for 2 months and maybe occasionally before that. Also, after I ate, I'd sit and listen to what sounded like a tornado in my belly... no pain... just lots of noise.

(edited to add that when I saw my GI for the first time, he asked me if I had any acid reflux and I told him occasionally, but it was always self-induced... from eating too richly or too late in the evening... BUT after I went gluten-free... guess what never happened again??)

My doc treated me for giardia (parasites) while we waited for the bloodwork... that was SUPER positive!! I never even had the endoscopy... I just went gluten-free that day!!

My daughter has the same symptoms... recently unrelenting diarrhea and the other fun aspects. Her blood work was "inconclusive" which I now understand to be in the middle of 3 categories... the first being negative, the middle being inconclusive, and the last being positive... so inconclusive does NOT mean negative.... she has some elevated antibodies.

She's been pushing the gluten for this test (on my recommendation... her doc didn't say a word).

Tonight she's having "blue box mac and cheese" in what I'm certain will be a farewell to gluten!

skoki-mom Explorer
skoki-mom
Posted

I feel your pain. I was just Dx last week, I am 150% asymptomatic (family member has it, I got screened). Anyhow, now I'm paranoid my 4 year old has it. Frequent complaints of tummy aches and on/off diarrhea. I will be sick sick sick if I gave it to her. She goes for her annual check up in a week and I'll request testing then. Think I'll just get my 7 year old screened as well and get it over with. Should be a fun day at the lab with both of them screaming at the top of their lungs. Anyhow, I feel bad because I'm almost 36, I can deal with it....I grew up "normal", I've had 35 birthday cakes, Halloween, Christmas, pizza parties as a teen, you name it. She isn't even 5 yet. I know there are far worse illness you could have, but it is hard for a kid to be different.

Guest Viola
Guest Viola
Posted

I realize it's hard to see our children get this disease from us, however, I don't understand feeling guilty about something we could do nothing about. Most of us had never heard of the disease when we had children, but still suffered through it un-diagnosed.

Perhaps getting past the guilt and finding creative ways to make it easier for them would be more constructive. After all, it really is getting better constantly with new products coming on the market etc. And .. if the children are young enough when they are diagnosed they would simply grow up knowing the stuff they can have, rather than going through the mental stress of loosing all the favorite foods. No cronic disease is easy for anyone, but I think children can be a little more accepting sometimes than adults.

celiac3270 Collaborator
celiac3270
Posted
How is it that my symptoms didn't show themselves till I was 49 and my daughter is only 25??

<{POST_SNAPBACK}>

I an answer that one. Okay, so you had the gene all your life. And you triggered it at age 49 (or beforehand and you just didn't get symptoms and realize it until 49). Triggers can be any number of things. Great amounts of stress, surgery, other intestinal problems, etc.

Your daughter had the gene as well. She triggered it much earlier, though, probably for one of the same reasons... (keep in mind, there are more triggers than this, I just don't remember them all). And there's always a possibility that she developed celiac a few years ago and just started displaying symptoms around the age of 25.

luvs2eat Collaborator
luvs2eat
Posted
  • Author

Thanks for the info, celiac3270, and you're right, of course, Viola... it's just that I hate to see my kids go thru what I've gone thru... and on the other hand... I've said in other threads that, given the horrors that can happen to people on any given day ... this is nothing.

Her endoscopy looked negative. The biopsy will tell... or will it?? told her she should really come here and read the wealth of information. She'll have to choose to continue with the physical symptoms or go gluten-free. She's in a quandry at the moment, even knowing about the higher change of small bowel cancers.

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

Celiac.com Sponsor (A8-M):


ianm Apprentice
ianm
Posted

There are many more, much, much worse genetic diseases you could have given them. They will be forced to eat a healthy gluten-free diet. Now why is that a bad thing?

Guest Viola
Guest Viola
Posted

:lol: It's not a bad thing Ianm. I think where most of us get frustrated is dealing with the gluten world and it's people.

And with children, it would be dealing with peer pressure, and there is more than enough of that now I'm sure.

But yes ... there are much worse things, and if more and more of us are diagnosed, but the time these children grow up, perhaps it will be a gluten free world, or at the very least ... equal :rolleyes:

Do we dare to dream?

  • 2 weeks later...
luvs2eat Collaborator
luvs2eat
Posted
  • Author

I dream!! I read an article recently about a restaurant in NYC that serves gluten-free pizza and beer!

Her diagnosis is definite. Luckily she loves to cook... I swear that was my saving grace... knowing how many foods are made and what to avoid at restaurants, etc. It's an ongoing education.

I told her to get herself in here ASAP as this is where the info and answers to questions are!

skoki-mom Explorer
skoki-mom
Posted
I dream!! I read an article recently about a restaurant in NYC that serves gluten-free pizza and beer!

Her diagnosis is definite. Luckily she loves to cook... I swear that was my saving grace... knowing how many foods are made and what to avoid at restaurants, etc. It's an ongoing education.

I told her to get herself in here ASAP as this is where the info and answers to questions are!

<{POST_SNAPBACK}>

Well, while I am sorry to hear your DD has celiac disease, I do hope that the gluten-free diet will help her feel better soon. I like cooking too, and I have seldom relied on packaged/processed type foods. I've always prepared fresh veggies at dinner and cook and season my own meats, so dinner is actually a snap for me because it has been mostly gluten-free for most of my life. I've found that you can leave the bread crumbs out of a lot of things and I just don't cook (obviously) the breaded type stuff anymore. Even my "regular" cookbooks are full of recipes that are just naturally gluten-free so I tend to stick with those so far instead of venturing into the unknown with gluten-free products. I also love baking, and I've had to do a lot of it this week with my DD's birthday on the 7th and back to school. I've made 1 batch of cookies, one regular cake, one gluten-free cake, and a batch of cupcakes! I'm really proud that I haven't cheated at all with all that baking, but I make my own icing and I admit I tasted and tested that quite liberally! (the icing is the best part anyway ;) ). Anyhow, I agree that both knowing how and enjoying cooking do make life easier! I just miss the convenience of throwing a frozen meat pie in the oven on those busy nights (kids activities after school and stuff), so I wind up eating nothing and then pigging out on popcorn later!

luvs2eat Collaborator
luvs2eat
Posted
  • Author

I sent her some Manna from Anna bread mixes... that's been my greatest find so far!!

Interestingly, her doctor told her she was LUCY to be diagnosed at 25 (I wondered if it wasn't like telling the bride it's good luck when it pours rain on her wedding day... ha) because she will avoid many problems in the future by going gluten-free now... like unexplained anemia and osteoporosis.

She's thrilled to hear too that more restaurants are offering gluten-free menus.

Like everyone's said... and I've said in the past... there are so many worse things... this is nothing.

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. Scott Adams
      0

      Celiac Disease Beyond the Western World: Hidden Populations, Changing Diets, and Growing Awareness

    2. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    3. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    4. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    5. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,357
    • Most Online (within 30 mins)
      7,748
    Tomo
    Newest Member
    Tomo
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.