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

Introduction As We Are Newly gluten-free


Jeepfreak81

Recommended Posts

Jeepfreak81 Newbie

Hello everyone,

 

My wife is newly Gluten Free (like less than 2 weeks in) and seems she's not big on Internet Forums I thought I'd join one for help, support, and ideas.  It's already getting very difficult and she wants to quick and just go back to eating wheat and feeling like crap.  She's very frustrated.  Here's a little background on the situation.

 

For many many years my wife has had stomach issues.  We met in 1999 and she had problems then.  In 2001 she underwent an endoscopy & colonoscopy at a top New England hospital (Dartmouth)  but they couldn't find any problems and chocked it up to IBS.  Over the past copule years or so she's been developing other ailments that the doctors can't diagnose.  Finally I was researching Gluten Intolerance and sure enough most of her symptoms were on the list.

 

It came to a head a little over a week ago when she had a pumpernickel bagle and almost instantly turned bright red over her entire body, she said it was tingly and painful.  Luckily we had some benedryl and after about 30 minutes it started going away.

 

The next day she went gluten free and one major problem she's been having cleared up immediatly.  Her feet (particularly the heels) have been killing her but as soon as she cut gluten out the pain went away.  Of course now she's suffering from withdrawels both physically and mentally.  She's Italian and we both grew up lower class in New England so bread and wheat were a HUGE part of our diets, especially hers.

 

So she's having a hard time and even says things that are natually gluten free that she used to like don't taste good anymore.  Most gluten free recipes and meal suggestions we find are fancy and involved instead of quick and simple.  I'm hoping she can stick it out and get through the withdrawels while we try and come up with more gluten-free food she can eat and enjoy.  She's already sick of chili and chicken (the two things we have the most of in our house at the moment)  I'm headed to the store now to get ingredients to make gluten-free corn bread so hopefully that'll help for today.

 

*sigh*  It's definetly tough, and I suffer from anxiety and panic disorder so seeing her depressed/upset really taxes my emotions as well.  Glad to have found a forum like this that seems active and full of other gluten-free people that aren't just doing it because they think it's a Fad.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I would suggest a celiac blood panel. A formal diagnosis may help your wife stick to the diet. You have to be eating gluten to get accurate results. Go to the University of Chicago's celiac website for lots of information and the proper testing requirements.

Oh, there are plenty of simple good things to eat that are gluten-free! We had salad, pot roast with carrots and potatoes, gravy, and applesauce with fresh strawberries lat night.

Jeepfreak81 Newbie

Thanks for the reply.  She also doesn't like red meat so that's one reason meals are a little tougher to think of.  I just went to the store and picked up a loaf of Rudi's gluten-free bread for her to try.  I had some and it wasn't bad.  She tried it and said it has a wierd after taste and she didn't really like it.  This is very frustrating as she's hardly eaten for 2 days and money is always an issue so we can't just keep buying stuff to try.  ugh.  Time for more reading and research.  I think I'm more anxious at this point than she is.

C-Girl Contributor

I just posted this in another part of the forum:

 

"In a 2010 study, only 12 of 32 individuals who said they felt better on a diet that excluded gluten or other wheat proteins actually had an adverse reaction to those molecules. “Thus, about 60 percent of the patients underwent an elimination diet without any real reason,” notes study author Antonio Carroccio of the University of Palermo in Italy."

 

It is very important to get an actual diagnosis before going on an elimination diet. 2001 is a long time ago - she could have developed celiac disease between then and now, but she could also have something completely different going on.

 

The internet is helpful for support and information, but it is dangerous to diagnose yourself or your wife by just searching the web. There is nothing better than real evidence to get someone to buy into a plan of treatment. Your wife is going to have a very hard time fully committing to a gluten free lifestyle without a diagnosis.

Jeepfreak81 Newbie

I agree that a test would be best, and maybe that's what we will do but with the insurance we have we'll have to pay for the entire thing out of pocket.  Definetly exploring that option and I'm giong to be checking out the University of Chicago website

C-Girl Contributor

I agree that a test would be best, and maybe that's what we will do but with the insurance we have we'll have to pay for the entire thing out of pocket.  Definetly exploring that option and I'm giong to be checking out the University of Chicago website

Ugh, insurance. Shop around! I found a $1000 difference between gastroenterologists when it came to the endoscopy, and the blood test for celiac is not cheap. But if you can stomach a few hundred bucks to get that done, and it's definitive, the level of confidence is such that she could probably skip the endoscopy. Mine was off the charts, but the doctor wanted to do the endo anyhow to see if I had an ulcer or other issues. Good luck!

GottaSki Mentor

Welcome Jeepfreak and wife!

 

I also strongly suggest having a complete celiac antibody panel.  If your wife has Celiac Disease, her health will only get worse with time.

 

Just an interesting aside...I thought I had an issue with beef, like steak for the last couple decades prior to diagnosis -- turns out I was intolerant of everything else I was eating along with meat.  Once I had removed all sources of gluten...I eat beef regularly and it tastes great now.


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



Celiac.com Sponsor (A8-M):



NoGlutenCooties Contributor

Welcome JeepFreak!

 

Just want to say that I admire and respect you for being so supportive of your wife - especially now as she fights through the withdrawal and the difficulties of changing a lifestyle!  I have always cooked for myself and stick to quick, simple meals and it is actually easy to do gluten-free.  Simple meat, veggies, and a starch (I prefer starchy veggies like squash, potatoes, or yams) make for a tasty, very healthy, and quick meal.  And it is much less expensive than getting the gluten-free bread and pasta replacements (healthier too, IMO).  As your wife gets through the initial withdrawal she'll most likely find that her tastes will change - but once she starts feeling better hopefully she'll realize that it's all worth it.

 

Hang in there and good luck!

livinthelife Apprentice

Hello everyone,

 

My wife is newly Gluten Free (like less than 2 weeks in) and seems she's not big on Internet Forums I thought I'd join one for help, support, and ideas.  It's already getting very difficult and she wants to quick and just go back to eating wheat and feeling like crap.  She's very frustrated.  Here's a little background on the situation.

 

For many many years my wife has had stomach issues.  We met in 1999 and she had problems then.  In 2001 she underwent an endoscopy & colonoscopy at a top New England hospital (Dartmouth)  but they couldn't find any problems and chocked it up to IBS.  Over the past copule years or so she's been developing other ailments that the doctors can't diagnose.  Finally I was researching Gluten Intolerance and sure enough most of her symptoms were on the list.

 

It came to a head a little over a week ago when she had a pumpernickel bagle and almost instantly turned bright red over her entire body, she said it was tingly and painful.  Luckily we had some benedryl and after about 30 minutes it started going away.

 

The next day she went gluten free and one major problem she's been having cleared up immediatly.  Her feet (particularly the heels) have been killing her but as soon as she cut gluten out the pain went away.  Of course now she's suffering from withdrawels both physically and mentally.  She's Italian and we both grew up lower class in New England so bread and wheat were a HUGE part of our diets, especially hers.

 

So she's having a hard time and even says things that are natually gluten free that she used to like don't taste good anymore.  Most gluten free recipes and meal suggestions we find are fancy and involved instead of quick and simple.  I'm hoping she can stick it out and get through the withdrawels while we try and come up with more gluten-free food she can eat and enjoy.  She's already sick of chili and chicken (the two things we have the most of in our house at the moment)  I'm headed to the store now to get ingredients to make gluten-free corn bread so hopefully that'll help for today.

 

*sigh*  It's definetly tough, and I suffer from anxiety and panic disorder so seeing her depressed/upset really taxes my emotions as well.  Glad to have found a forum like this that seems active and full of other gluten-free people that aren't just doing it because they think it's a Fad.

The first few weeks are rough and sometimes just knowing you can't have something makes it even worse. It's like our inner teenager SCREAMING!!!

 

Good luck to you and you're awesome for being so supportive!

Jeepfreak81 Newbie

Thanks everyone for the tips and the welcome.  Actually things have seemed to have gotten better for her in the past day or 2.  We're finding more things we can cook that she likes and she even tried some Rudi's gluten-free bread and said it was ok for toast or breakfast sandwiches.  Probably gonna have to make our own at some point.  She's sticking to it which is good.  The bummer is that down the line when we can afford the test she'll have to gobble down the gluten and start this all over again.

 

Hoping to learn lots here!

GFinDC Veteran

Welcome Jeepfreak!  (Wave here)

 

Really the healthiest way to go gluten-free is to switch to eating  mostly whole foods.  Forget about the processed foods for a few months and stick with home cooked meals made from veggies, meats, nut, fruit.  You don't even need to eat bread at all.  You can eat rice wraps instead.

 

One easy snack is a microwaved sweet potato.  Nuke it for 8 to 10 minutes and then dig out the innards with a big spoon.  Mix in some peanut butter or choc chips.

 

Super Easy Meal Ideas Anyone?
https://www.celiac.com/forums/topic/97027-super-easy-meal-ideas-anyone/

Good Gluten Free Meals Prepared Using A Microwave?
https://www.celiac.com/forums/topic/102685-good-gluten-free-meals-prepared-using-a-microwave/#entry885634
 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

NoGlutenCooties Contributor

Thanks everyone for the tips and the welcome.  Actually things have seemed to have gotten better for her in the past day or 2.  We're finding more things we can cook that she likes and she even tried some Rudi's gluten-free bread and said it was ok for toast or breakfast sandwiches.  Probably gonna have to make our own at some point.  She's sticking to it which is good.  The bummer is that down the line when we can afford the test she'll have to gobble down the gluten and start this all over again.

 

Hoping to learn lots here!

 

Just wanted to mention that if she goes 100% gluten-free for a few months and gets symptom relief and then tries to eat something with gluten in it she is likely to have a fairly obvious and strong reaction.  I got glutened by accident after being gluten-free for 3 months and it was just like getting food poisoning.  At that point, it would be completely unnecessary to go through a gluten challenge just to get confirmation of what at that point would already be known... the only reason to have a reaction like that is if you have Celiac or non-Celiac gluten intolerance.

Archived

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

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

      Supplements for those Diagnosed with Celiac Disease

    2. - 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?

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

      Supplements for those Diagnosed with Celiac Disease

    4. - 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.

    5. - catnapt 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?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748

    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      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
      @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
      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
      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
      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.