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I Worry Too Much.

dandelionmom

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dandelionmom Enthusiast
dandelionmom
Posted

I couldn't sleep last night because I was worried about how Julia would keep healthy when she goes off to college. That is 15 years away! What is wrong with me?!

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buffettbride Enthusiast
buffettbride
Posted

Oh my gosh! So do I! Especially about college since I know my daughter wants to live out of state to go to college.

She's only 10, :o so that's only 8 MORE YEARS!!! :rolleyes:

Thankfully, she'd like to go to college in NY so I feel better about that being a gluten-free-friendly place than just about anywhere from what I've heard.

shan Contributor
shan
Posted

You know what my fears are? That her social life will be a nothing, and that no one will like her (she is not yet 3!) but then i think that everyone has to worry about something! I also worry about who will want to marry or date someone who cant even be in a house where there is flour!

hathor Contributor
hathor
Posted

Rest assured, whatever you are worried about when your kids are little turns out not to be what the problems are when they actually DO go off to college :lol:

There is growing awareness of celiac. Even now, college students can go to the food service and work with them to get acceptable food. The latter have been dealing with allergies, diabetes, etc., for years. This is just one more thing. I think when gluten intolerant college students run into trouble it is when they don't talk to food service and just guess what might be safe.

Any child avoiding gluten for years will learn how to do so, what to look for, how to talk to restaurants, etc.

If someone is shallow enough that s/he wouldn't want to be with someone who can't eat a particular food, I say good riddance!

buffettbride Enthusiast
buffettbride
Posted
If someone is shallow enough that s/he wouldn't want to be with someone who can't eat a particular food, I say good riddance!

We assure our daughter of this CONSTANTLY and are trying to set a good example of what someone who cares for her would be like.

-Her home gets to be gluten free and a complete "safe" zone

-Her daddy even only drinks gluten-free beer now so he can smooch our daughter with no worries

We tell her that any boy who is worth anything won't hesitate to make those concessions to keep her safe.

Even at age 10, a boy in class who digs her is always showing off his gluten-free snack bar (his family is very organic and health conscious) to try and impress her. :D It is absolutely adorable.

kbtoyssni Contributor
kbtoyssni
Posted

If it makes you feel any better, I'm 25 and my social life is much better now that I'm gluten-free than it was before. By the time your children reach college, they'll be pros at the diet. They'll take everything you're teaching them now about the diet and how to deal with it with them when they go to college. You've got years to prepare them so I'm sure they'll be just fine.

buffettbride Enthusiast
buffettbride
Posted
If it makes you feel any better, I'm 25 and my social life is much better now that I'm gluten-free than it was before. By the time your children reach college, they'll be pros at the diet. They'll take everything you're teaching them now about the diet and how to deal with it with them when they go to college. You've got years to prepare them so I'm sure they'll be just fine.

If I could bottle your outlook and attitude and sell it to the masses, I'd be a very wealthy woman.

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debmom Newbie
debmom
Posted

I can relate. My daughter was 15 when diagnosed and is 16 now. So college is just two years away. But she is SOOO good about her diet and has found so many things to eat that she enjoys. Occasionally she has a mini-meltdown, but overall she feels so much better that the diet isn't an issue.

I will still send her to school/ college with homemade goodies for all occasions. I make cakes and brownies and freeze them for parties and places she will encounter non-gluten free food that she used to enjoy. So far the kids seem to like my gluten free brownies better than the regular, so the only problem is that I'm baking them all the time.

Her girlfriends had a surprise party for her birthday last week and they were so cute. they shopped for all sorts of gluten free food and even worried about latex in balloons (which I assured them were OK) They seem so relieved to know why she was so sick and seem to cherish her friendship even more now that she is able to be back at school with them. So stop worrying. You will all adjust. I spent almost a year with sleepless nights, but rarely so anymore.

Kids are resilient. And if their friends are really friends, they will hlep your daughter cope with being gluten free.

dandelionmom Enthusiast
dandelionmom
Posted
  • Author

Thanks everyone! It is nice to know that I'm not the only one with these worries and the encouraging stories are so good to hear! My husband is fabulous and so supportive but he tends to laugh at me a little when I get going with my crazy worries. :)

darlindeb25 Collaborator
darlindeb25
Posted

I had to laugh at this thread, not because you worry, but because just last week I told someone that "worry" is my middle name. I worry that my kids have celiac and aren't in the frame of mind to do anything about it for now! I worry that my grandkids will have it and their parents won't realize it! I worry that I recognize the symptoms in friends and can't make them realize the seriousness of the disease. I also worry about the weather, my family, my friends--you name it, I worry.

I do not know how to change. Yet, the way I am is who I am and if I change, then who will I be. Now I will worry about that. :o

kbtoyssni Contributor
kbtoyssni
Posted
If I could bottle your outlook and attitude and sell it to the masses, I'd be a very wealthy woman.

Can I get a percentage of the profits? :P I do have a very positive attitude. Life's too short to spend it being negative and bitter about things I have no control over.

laurelfla Enthusiast
laurelfla
Posted

I can so relate to this thread! I am a big worrier, too, and I worry about that and try to change it all the time! ;) No luck yet...

I worry about when to introduce cereals to my baby and how to do that, and I am not planning to have children for at least three more years! I think developing Celiac or taking care of someone who has opens up an entire world of potential worry we couldn't even have imagined beforehand!

But to throw in my two cents, after diagnosis a little over two years ago, I met the man of my dreams who, once he found out what I had, investigated on his own to learn about the disease, still won't eat pizza in front of me, and readily accepted living in a completely gluten free house in December after we get married and eating gluten free at home for the rest of his life! He's more supportive than I ever would have dared ask for. So not to worry! These guys are out there! :D

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
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      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
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      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
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      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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