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

Recently Diagnosed - Need Help

LLH

By LLH
in Coping with Celiac Disease

Recommended Posts

LLH Rookie
LLH
Posted

I was diagnosed 2 months ago and have been trying diligently to be gluten free with only a few mishaps. What symptoms will I have if I eat something with gluten? Before being diagnosed, I would get severe stomach pains that would result in an ER visit about 3 times a year. Why would I only have these symptoms once in a while? Its hard for me to accept this disease when I had such few outbursts. For me, I would accept the few trips to the ER to eat normal again.

Also, after starting my diet, it seemed like I had an energy burst. Lately, I am so exhausted and tired that I can barely function. I felt this way prior to my diagnosis but why do I feel so tired now?

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted
I was diagnosed 2 months ago and have been trying diligently to be gluten free with only a few mishaps. What symptoms will I have if I eat something with gluten? Before being diagnosed, I would get severe stomach pains that would result in an ER visit about 3 times a year. Why would I only have these symptoms once in a while? Its hard for me to accept this disease when I had such few outbursts. For me, I would accept the few trips to the ER to eat normal again.

Also, after starting my diet, it seemed like I had an energy burst. Lately, I am so exhausted and tired that I can barely function. I felt this way prior to my diagnosis but why do I feel so tired now?

It can take more then 2 months to get rid of symptoms. It will take longer especially if you cheat alot.

It's more then just the symptoms...its the DAMAGE you do to your intestines. By ignoring the diet you slowly kill yourself. It takes years off of your life and puts you 40-100 times more likely to get life threatening illnesses.

Some people do not get symptoms so I can't tell you what you will and will not experience.

You may also have gluten slipping into your diet somehow ...with cross contamination or with products such as lipstick or things you put on your hands, face,or head(shampoo,lotions,cosmetics, etc)

It is definitely not worth it to cheat even if you feel fine after eating gluten you will still get damage.

It's not a bad diet to follow...gluten=bad health....no gluten=great health...is there really a choice there?

There are great gluten free foods. For everything with gluten there is something without. Get yourself a gluten free candy bar or a treat you can have.

mela14 Enthusiast
mela14
Posted

it could be that eating gluten finally took it's toll. stick to the diet and give it time. you need to do some healing inside. going gluten-free can only help you. are you taking vitamins? often times with this disease you don't absorb nutrients well enough which can lead to a bunch of things...fatigue being one of them.

keep us posted, :rolleyes:

LLH Rookie
LLH
Posted
  • Author

Thanks for the information. Is my exhaustion a result of celiac disease? I have not cheated on the diet at all and have been on it for approx. 10 weeks. I have accidentally eaten something a couple of times that may have had a small amout of gluten in it. It seems like I would feel a lot better by now as far as being tired, etc.

Also, I was diagnosed after having an upper GI. Is it reasonable to ask to be retested to see if the damage is gone? I have a doctors appointment next week and feel like for my emotional sake I need to know that what I am doing is making a difference.

I also get a numbing pain on the right side of my body at night. It's hard to explain, but would this be a result of celiac disease?

KaitiUSA Enthusiast
KaitiUSA
Posted

It could be related to celiac or from complications of celiac.

I highly recommend you get on a vitamin(I prefer liquid because of the way it is absorbed in the body), enzymes, and probiotics. These are essential!

Some people dont feel better for a long time it depends how long you went diagnosed etc...

It took me 3 months to feel alot better then a few more to get back to normal. Some people take more time then that and some less time.

Don't get your expectations too high that all of your problems will go away at the drop of a hat..it takes time.

This is a great place for support too :D

Feel better soon...and I would check products that you put on your hands, face, and head because they can easily get into your mouth and that little bit can cause problems. Try to eliminate all possibilities.

Good luck :D

Guest Eloisa
Guest Eloisa
Posted

No energy and feeling exhausted was the main things I felt other than having chest pains, reflux and stomach needling pains. It was so bad I couldn't even get up out of bed throughout the day. Even after I got on the gluten-free diet and only ate at home and made sure everything was legal I still had no energy and was in a constant fog. It got to the point where I would drive somewhere and had no idea how I got there - it was as if I was in a dream and couldn't wake up. My Gastro dr said I needed to find a liquid vitamin since I wasn't absorbing anything. After trying several different products including enzymes and other stuff nothing worked or made me feel any different. Also most of what I found in these vitamins was some sort of gluten in it. I was later introduced to a food/vitamin called Reliv and it took 10 days to take effect on me. I feel like a teenager again and have all sorts of energy and am feeling of really healthy. It has changed my life and I've seen it change others that have intestinal problems.

Canadian Karen Community Regular
Canadian Karen
Posted

Can I ask where you found this Reliv? Is it at health food stores? Do you know if it is available in Canada?

Thanks!

Karen

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

Celiac.com Sponsor (A8-M):


jknnej Collaborator
jknnej
Posted

Your intestines are supposed to heal after being gluten-free for awhile, so getting another biopsy and having it look better than the last is NOT an indication that you don't have celiac disease. If you had positive bloodwork and an upper endoscopy and they both came out positive, you should probably work on accepting the fact that you have this disease. Not everyone has symptoms so saying your stomach doesn't hurt that often isn't an indicator. Plenty of people are diagnosed and have had NO problems whatsoever.

It is hard at first, but there are hundreds of thousands of us who live perfectly fulfilling lives with Celiac Disease. In fact, I am glad I have it because I have learned to eat healthier as a result of it!!!

And most of us are very busy; I work 15 hour days most days and travel a lot. If I can do it, so can you!

jenvan Collaborator
jenvan
Posted

Eloisa-

Is this the Reliv supplement you were talking about??

Open Original Shared Link

jenvan Collaborator
jenvan
Posted

Karen-

If this is the right product, which is sure seems like--they have a Canadian site too:

Open Original Shared Link

Canadian Karen Community Regular
Canadian Karen
Posted

Thanks Jen!

I just e-mailed them to get some info. Maybe this will help me.....

Hugs.

Karen

Guest Eloisa
Guest Eloisa
Posted

Jen,

Yes that is the website for it. You can find stories and all sorts of stuff in that website. Please call me on my cell phone 713-825-8430 . I'm in Houston, Texas but Reliv is and International Company which is in Canada and is fixing to go into Germany.

Eloisa

Guest Eloisa
Guest Eloisa
Posted

Karen,

You can't find this stuff in the health food stores. I looked in stores myself and wound up hurting my intestine more with most of the stuff they have. Reliv is a patented product and they will never put in stores. They pride themselves on customer service and being able to speak with people who are on their products. I'v been on them for over a year and have felt great. It not only has helped with the celiac disease but has helped me with other symptoms and problems I have had. Karen, you can call me at 713-825-8430 - I'm in Houston, Texas.

Eloisa

  • 1 year later...
givingthanx Newbie
givingthanx
Posted

Not to be rude or anything - but Eloisa is obviously a Reliv rep. Reliv is a multi-level marketing business, like Amway. That's why it's not available in stores. That's why she gave you her phone number and wants you to call her instead of giving you the information you need via this forum. That's also why, if you do a search on Reliv on the glutenfreeforum site, Eloisa is almost always the instigator of the subject.

Could Reliv be beneficial for celiacs? It's possible. But I saw a posting by someone who said it's not gluten-free, and who had problems with it. I'm going to search further. My mind is not completely made up because I like to see more than one reference. Plus, I still need to go to the main Reliv site (www.reliv.com) and look at the ingredients. It seems like, at the very least, it might be a decent product for non-celiacs.

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

      Bob red mill gluten free oats

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

      Disaccharide deficient, confusing biopsy results, no blood test

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

      Bob red mill gluten free oats

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    4. jenniber
      - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks! i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me b...
    5. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      High TTG-IgG and Normal TTG-IgA

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,849
    • Most Online (within 30 mins)
      7,748
    Jadelucia
    Newest Member
    Jadelucia
    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)

  • Upcoming Events

  • Posts

    • trents
      Bob red mill gluten free oats

      By trents · Posted

      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
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      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
      Bob red mill gluten free oats

      By Paulaannefthimiou · Posted

      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
×
×
  • 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.