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

Starting A Gluten-free Diet


janie-b

Recommended Posts

janie-b Newbie

Hello, all. This is my first post in this forum, and I guess I'll find out over the next few weeks/months if I really need to be here, but I sure think I do.

I've been taking Nexium/Prevacid/Prilosec for the last couple of years, and suddenly a month or so ago it stopped working in the middle of the afternoon. I'm feeling all bloated and burpy again. I was complaining about this yesterday, and my husband asked if I'd ever been tested for Celiac disease. He heard an episode of People's Pharmacy on NPR discussing Celiac.

Well, the more I read up on this, the more it seems to fit me. In the 36 hours that I've been without bread, I already feel like a different person.

My symptoms are the obvious ones of bloating, burping, lactose intolerance, and flatulence, as well as some that are not so obvious...depression, very dry and thin skin, easy bruising, huge appetite. I look much older than I am (I'm 51, and at least once a week someone in a store will ask me if I'm eligible for the seniors' discount). And I hope not to be too gross about this, but I would be mortified if I had to have a bm in the bathroom in someone else's house. It is unpleasant in the extreme.

My digestion has always given me problems, but it's gotten progressively worse over the years. At one time I could control it by limiting fat intake, but about five years ago that stopped helping. I finally talked to my doctor about it, which was when I started taking GERD medications. They've helped with the burping and bloated feeling until recently. I also had gall bladder problems about 3 years ago and had the laparoscopic surgery to have it removed. At about that same time I started taking fluoxetine (Prozac) because I was teary, worrying myself to death, and having a terrible time concentrating at work.

I am not fond of doctors, and my medical insurance stinks, so I'm going to try the gluten-free diet and see how I feel over the next few weeks. But like I said, I already feel better. Oddly enough, the "nibbles" that I ALWAYS have are gone already. That may be all in my head...maybe, and maybe not.

If it turns out that this diet really helps me, do you suppose I can eventually do without the Prilosec and Prozac? Does anyone have experience with this? Any pointers for someone starting out on their own? Is it risky for me to do this without the involvement of my doctor? I like my doctor, but sometimes I think they're all about trial and error, and in this case, I think I can do that much on my own.

Many thanks,

Jane


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



Celiac.com Sponsor (A8-M):



Lisa Mentor

Welcome Jane:

I am glad that you are feeling better eliminating bread. Celiac Disease is complicated in the fact that it is very difficult at first to identify gluten. Wheat can be in soy sauce, lipstick, shampoos and every where you never would have thought. Gluten consists of wheat, barley, malt, rye and many oats.

Those of us with Celiac Disease must eliminate all gluten in our diets.

I would encourage you to read many of the posts here. I am sure that you will find it very informative.

CarlaB Enthusiast

Welcome!

Dietary response is a very valid diagnostic tool. Look around here, learn, ask questions. It'll take you a while to get all the gluten out of your life.

Fiddle-Faddle Community Regular

Wow, Janie, you sound much more intelligent than a lot of the doctors I have seen!

Yes, it is possible you might be able to wean off your meds, but only time will tell, and I suspect the weaning part may be very important. Many people here have weaned off of antacids (although I haven't yet, but I hope to), and many have been able to reduce the amount of psych meds they need.

Have you been tested for low thyroid? Celiac and autoimmune thryoid disorders are a classic combo, unfortunately, and the teariness, dry skin, and huge appetite could be caused by a fluctuating thyroid hormone level. there is also some question about whether traditional thyroid testing and meds are actually effective--see www.stopthethyroidmadness.com for more info.

Do a search on this board for someone called Nini--she ahas a marvelous Newbie kit you can download that has lots of information. I also recently found a very helpful website full of simple explanations and gluten-free recipes: www.gfutah.com

May I also suggest fresh air and exercise EVERY day as a drug-free way to combat the teariness? Drugs can also increase appetite and cause weight gain, tiredness, and all kinds of other side effects. Of course, you should not stop takng any prescription meds without at least consulting a doctor or pharmacist, and preferably getting their advice on how best to wean off!

Anyway, welcome aboard. I have found an amazing community of knowledgable and caring people who have been through the same rollercoaster of unpleasant symptoms and ignorant, skeptical doctors who couldn't care less. I have learned more about celiac and other autoimmune disorders on this website than most doctors learn in medical school! Check out the recipes thread!

oceangirl Collaborator
Wow, Janie, you sound much more intelligent than a lot of the doctors I have seen!

Yes, it is possible you might be able to wean off your meds, but only time will tell, and I suspect the weaning part may be very important. Many people here have weaned off of antacids (although I haven't yet, but I hope to), and many have been able to reduce the amount of psych meds they need.

Have you been tested for low thyroid? Celiac and autoimmune thryoid disorders are a classic combo, unfortunately, and the teariness, dry skin, and huge appetite could be caused by a fluctuating thyroid hormone level. there is also some question about whether traditional thyroid testing and meds are actually effective--see www.stopthethyroidmadness.com for more info.

Do a search on this board for someone called Nini--she ahas a marvelous Newbie kit you can download that has lots of information. I also recently found a very helpful website full of simple explanations and gluten-free recipes: www.gfutah.com

May I also suggest fresh air and exercise EVERY day as a drug-free way to combat the teariness? Drugs can also increase appetite and cause weight gain, tiredness, and all kinds of other side effects. Of course, you should not stop takng any prescription meds without at least consulting a doctor or pharmacist, and preferably getting their advice on how best to wean off!

Anyway, welcome aboard. I have found an amazing community of knowledgable and caring people who have been through the same rollercoaster of unpleasant symptoms and ignorant, skeptical doctors who couldn't care less. I have learned more about celiac and other autoimmune disorders on this website than most doctors learn in medical school! Check out the recipes thread!

Welcome, Janie.

I have nothing brilliant to add but would echo others that, if you choose not to go the traditional "Western Medicine" route, getting the gluten out should tell you a lot. One thing that seems clear to me in my now nine- month odyssey of researching gluten, is: NOT ENOUGH RESEARCH HAS BEEN DONE ON THIS ISSUE!!! I think the tide is turning, but we're all just on the cusp of it. Read on here- useful information abounds!

Good luck and welcome!

lisa

Lisa Mentor

Jame:

Posting twice as I did not answer your question. I had gerd ALOT and it has appeared to have gotten better since gluten free. I do have a large hiatal hernia, so I still take antacids, which most likely the culpret and not celiac.

Try going 100% and check your personal products and make sure they are safe and gluten free. If you try for a month and see improvement, your in good shape.

But, if you choose to be tested, do NOT go gluten free. It will throw off you dx.

I hope that all these good people have been helpful to you. And, as always, feel free to ask away.

janie-b Newbie

Thanks everyone for your responses, and for making me feel welcome. I have been reading some of the threads...I had no idea that the potential exposure went beyond food. I will start checking everything, and continue to read.

Best regards,

Jane


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

Welcome. I don't have really anything else useful to add, other than to be very diligent in tracking down *all* sources of gluten exposure - not just bread, of course. :) Keep reading, keep posting, and good luck trying the diet. Let your doctor know what you're doing, but you certainly don't need permission to change your diet. :) As for the meds, I don't know that it's a problem to wean off those without doctor coordination, but it's worth talking about, even if you intend to do it regardless of doctor direction, just to keep him aware. (I don't think docs always are fully up to date, but do believe in keeping them in the loop, even if it's letting them know you're ignoring their advice. :P )

Ursa Major Collaborator

Hi Janie, and welcome to this board. You've gotten excellent advice already. I want to add that you absolutely need a new toaster if you're going to eat gluten-free bread. You can't clean your old toaster well enough to be safe.

Here is the link to Nini's website, where you'll find the newbie survival kit (scroll down to the bottom), it will give you invaluable advice and will save you a ton of time on research. Open Original Shared Link

Guest nini

Wow... I was coming on this thread to post about the newbie kit and you guys have already done it for me! LOL!

Welcome Jane!

janie-b Newbie

Hello, all, I'm back to give a quick follow up. I haven't had a chance to be around to read much this week, but hope the weekend will allow for that.

I've been off gluten for five days now, and am noticing many differences (improvements) that in the past I had attributed to my low-carb diet. The swelling in my ankles, feet, and legs has decreased markedly. My whole digestive system is calmer, and I do not feel bloated at all after I eat. In the five days I've been eating this way, I have only had to take my Prilosec twice; the other three days I have been just fine without it. I have much less "brain fog" as well, and generally feel more energetic, less achy. I didn't realize how achy I was all over. I am also having almost no food cravings.

The one strange thing I've noticed is that I am so sleepy by about 9 p.m. that I just cannot stay awake. It has been my habit to stay up until at least 11, so this is really unusual for me. I also noticed just a little bit of irritability for two days, but that appears to be gone today.

Also, I have lost five pounds this week. I am very overweight, so this is definitely not a bad thing.

It will be interesting to see how this progresses over the next few weeks. I am comfortable eating this way, and it seems much less restrictive to me than the low carb lifestyle. There are many things I can eat now that I have denied myself for a long time. I am happy to have peas, rice, potatoes, and corn. The recipe I came up with for cornmeal breakfast bread is keeping me happy when I want something on the run, or something that resembles a sandwich. All in all, this has been a very encouraging week for me.

Mother Goose, thank you for your e-mail. I will respond properly very soon.

Best regards,

Jane

GFBetsy Rookie

Just wanted to add a quick welcome! You sound like this is helping a lot already. Keep checking in here if you have questions or need encouragement . .. that's what we're here for!

Fiddle-Faddle Community Regular

Hi, Janie, that's great! I'm so glad you are feeling better AD losing weight!

I have the same can't keep my eyes open past 9 thing, too--never thought of connecting it to gluten-free diet, but who knows. And I am sleeping much better, too! I have an easier time getting up in the morning than I used to.

This cornmeal breakfast bread sounds yummy--would you be able to share the recipe?????

CarlaB Enthusiast

If your feeling better, maybe your body is just taking the opportunity to do some healing and that is what's making you tired. It takes a lot of energy to get better.

I'm glad it's working out for you.

  • 3 weeks later...
sydney Newbie
Hello, all, I'm back to give a quick follow up. I haven't had a chance to be around to read much this week, but hope the weekend will allow for that.

I've been off gluten for five days now, and am noticing many differences (improvements) that in the past I had attributed to my low-carb diet. The swelling in my ankles, feet, and legs has decreased markedly. My whole digestive system is calmer, and I do not feel bloated at all after I eat. In the five days I've been eating this way, I have only had to take my Prilosec twice; the other three days I have been just fine without it. I have much less "brain fog" as well, and generally feel more energetic, less achy. I didn't realize how achy I was all over. I am also having almost no food cravings.

The one strange thing I've noticed is that I am so sleepy by about 9 p.m. that I just cannot stay awake. It has been my habit to stay up until at least 11, so this is really unusual for me. I also noticed just a little bit of irritability for two days, but that appears to be gone today.

Also, I have lost five pounds this week. I am very overweight, so this is definitely not a bad thing.

Best regards,

Jane

I've been gluten free for about 2 weeks now and have noticed that I have been tired alot as well. My guess is my body may be de toxing itself as I have lost a few pounds as well. Anyone know how long it will be before my energy levels are back to normal?

I also bought a great gluten free cookbook ....i've only made the pumpkin bread so far but it was very good!

the title is : gluten free baking classics

author: annalise roberts

- sydney

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. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    2. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    3. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

    4. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

    5. - Paulaannefthimiou posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

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

    • Total Members
      132,859
    • Most Online (within 30 mins)
      7,748

    Santa Don
    Newest Member
    Santa Don
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
×
×
  • 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.