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

Question About Gluten Enzymes And Gluten Intolerance.


rueyn

Recommended Posts

rueyn Apprentice

I tested negative (blood and gene) for Celiac, but I definitely have gluten intolerance. I've been gluten free for a year now and am doing 100% better. I've been seeing and hearing about gluten enzymes, and I know they can't be used in the case of true Celiac patients, but has anyone ever used them as with non-Celiac gluten intolerance? I don't get stomach aches when I eat gluten; my symptoms are things like brain fog, the need to sleep, et cetera. I'm not convinced an enzyme would make a difference with those kind of symptoms...unless the enzymes got rid of all the gluten before it could be absorbed or something like that?

Any personal experiences would be appreciated.


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



Celiac.com Sponsor (A8-M):



Lynayah Enthusiast

I tested negative (blood and gene) for Celiac, but I definitely have gluten intolerance. I've been gluten free for a year now and am doing 100% better. I've been seeing and hearing about gluten enzymes, and I know they can't be used in the case of true Celiac patients, but has anyone ever used them as with non-Celiac gluten intolerance? I don't get stomach aches when I eat gluten; my symptoms are things like brain fog, the need to sleep, et cetera. I'm not convinced an enzyme would make a difference with those kind of symptoms...unless the enzymes got rid of all the gluten before it could be absorbed or something like that?

Any personal experiences would be appreciated.

I found this article . . . is this the enzyme you are talking about?

Open Original Shared Link

rueyn Apprentice

I found this article . . . is this the enzyme you are talking about?

Open Original Shared Link

Yes, I'm specifically talking about GlutenEase and/or Peptizyde :)

RiceGuy Collaborator

I actually tried one such product (not the ones specifically mentioned). Ironically, even though it claims to be gluten-free, it apparently has an enzyme derived from barley, and I had a gluten reaction to it. Hopefully the ones you're looking at don't have this.

Lynayah Enthusiast

I actually tried one such product (not the ones specifically mentioned). Ironically, even though it claims to be gluten-free, it apparently has an enzyme derived from barley, and I had a gluten reaction to it. Hopefully the ones you're looking at don't have this.

Me, too. We had a few different digestive enzymes in the house -- all of them appeared to be gluten-free, but when I called the various companies and spoke with them, they were not gluten-free.

I have used Digest Gold and GlutenEase with no problem. My jury is still out as to whether or not GlutenEase helps, but I think it very well may. At least it can't hurt! I use it to help combat cross-contamination only and not as something that might allow me to eat gluten -- that would be like death waiting to happen.

rueyn Apprentice

Me, too. We had a few different digestive enzymes in the house -- all of them appeared to be gluten-free, but when I called the various companies and spoke with them, they were not gluten-free.

I have used Digest Gold and GlutenEase with no problem. My jury is still out as to whether or not GlutenEase helps, but I think it very well may. At least it can't hurt! I use it to help combat cross-contamination only and not as something that might allow me to eat gluten -- that would be like death waiting to happen.

Do you know if it's helped in a specific case of cross-contamination? If so, do you normally just get stomachache-type symptoms with CC or do you also get neurological? Did it just "ease" your symptoms, or did it keep you from getting sick all together?

Lynayah Enthusiast

Do you know if it's helped in a specific case of cross-contamination? If so, do you normally just get stomachache-type symptoms with CC or do you also get neurological? Did it just "ease" your symptoms, or did it keep you from getting sick all together?

Ease. I get both neurological as well as stomach reactions.

I get numbness like crazy -- hands in particular, but also legs if it is really bad and now, shoulders and back of neck.

I also get stabbing pains in my hips and kidney area along with the usual bloating, body aches, etc.

Sometimes the pain is constant; other times it comes in waves -- like a few minutes on; a few minutes off -- like labor pains.

The pain might be best be described as having an abcessed tooth, but in a muscle or on my skin (yes, my skin hurts) instead of a tooth.

Sleeping can be particularly painful. Hips - ouch!

I'm still new to the product. Time will tell if my assumption that it helps is correct. Right now, it seems as though when I know I've been cc'd (bowel leakage is usually the first sign), it helps ease the symptoms if I take it right away.

The problem is, I just don't know for sure. I'm still new to my diagnosis. Sometimes the symptoms are intense, other times they are not-so-intense, but the not-so-intense reactions could also be from my being sensitive to other foods.

There is also the issue of my body absorbing enough Vitamin D.

Nothing is easy!

That said, I do have to say that when I take GlutenEase upon the first signs of being glutened, I seem to not get as intensely ill as if I had not taken it. It is not a cure (how I wish it were), but rather a cushion that helps me though the whole thing. My body aches are not as intense (even though I still hurt), and loss of bowel control not as intense. I also think that my bloating may subside a little sooner.

As I said, my jury is still out. In the meantime, it is comforting to carry GlutenEase with me, along with Digest Gold.

Gawd, how I wish they weren't so darn expensive.


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



Celiac.com Sponsor (A8-M):



rueyn Apprentice

Ease. I get both neurological as well as stomach reactions.

I get numbness like crazy -- hands in particular, but also legs if it is really bad and now, shoulders and back of neck.

I also get stabbing pains in my hips and kidney area along with the usual bloating, body aches, etc.

Sometimes the pain is constant; other times it comes in waves -- like a few minutes on; a few minutes off -- like labor pains.

The pain might be best be described as having an abcessed tooth, but in a muscle or on my skin (yes, my skin hurts) instead of a tooth.

Sleeping can be particularly painful. Hips - ouch!

I'm still new to the product. Time will tell if my assumption that it helps is correct. Right now, it seems as though when I know I've been cc'd (bowel leakage is usually the first sign), it helps ease the symptoms if I take it right away.

The problem is, I just don't know for sure. I'm still new to my diagnosis. Sometimes the symptoms are intense, other times they are not-so-intense, but the not-so-intense reactions could also be from my being sensitive to other foods.

There is also the issue of my body absorbing enough Vitamin D.

Nothing is easy!

That said, I do have to say that when I take GlutenEase upon the first signs of being glutened, I seem to not get as intensely ill as if I had not taken it. It is not a cure (how I wish it were), but rather a cushion that helps me though the whole thing. My body aches are not as intense (even though I still hurt), and loss of bowel control not as intense. I also think that my bloating may subside a little sooner.

As I said, my jury is still out. In the meantime, it is comforting to carry GlutenEase with me, along with Digest Gold.

Gawd, how I wish they weren't so darn expensive.

Thanks so much for taking the time to let me know how it works for you! It sounds like you and I have similar reactions to gluten, and I'd been thinking since I "only" have gluten intolerance I could use it to eat gluten once in awhile, to help side-step the intolerance, but it doesn't sound like it's worth it (I was thinking of it as Lactaid...doesn't sound like that's exactly how it works).

When I eat gluten I am sick for two weeks - body aches, brain fog, bloating, et cetera. Probably no magic pill to help that =)

Lynayah Enthusiast

Thanks so much for taking the time to let me know how it works for you! It sounds like you and I have similar reactions to gluten, and I'd been thinking since I "only" have gluten intolerance I could use it to eat gluten once in awhile, to help side-step the intolerance, but it doesn't sound like it's worth it (I was thinking of it as Lactaid...doesn't sound like that's exactly how it works).

When I eat gluten I am sick for two weeks - body aches, brain fog, bloating, et cetera. Probably no magic pill to help that =)

You are right. From what I have been told, anyone with gluten-intolerance should absolutely not use it to side-step gluten.

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. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    2. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    3. - Theresa2407 replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    4. - Heatherisle replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      28

      Pain in the right side of abdomen

    5. - Aretaeus Cappadocia replied to Anne G's topic in Related Issues & Disorders
      2

      celiac disease and braces

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

    • Total Members
      133,705
    • Most Online (within 30 mins)
      7,748

    Gigisboysx2
    Newest Member
    Gigisboysx2
    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

    • knitty kitty
      @Heatherisle, You have good reason to worry.   Ask the doctors to do an Erythrocyte Transketolace Activity Assay to test for Thiamine B1 deficiency.  Thiamine deficiency is frequently found in B12 deficiency.  Deficiencies in all the B vitamins are common with malabsorption due to Celiac disease.  Thiamine can run out in as little as three days.   Thiamine deficiency symptoms can be mistaken for other diseases such as MS and Guillian-Barre Syndrome.  Thiamine deficiency symptoms include pain in legs and abdominal pain as well as depression and gastrointestinal symptoms. Thiamine B1, Pyridoxine B6 and Cobalamine B 12 together relieve nerve pain. References and Interesting Reading: Wernicke’s encephalopathy mimicking multiple sclerosis in a young female patient post-bariatric gastric sleeve surgery https://pmc.ncbi.nlm.nih.gov/articles/PMC8462913/ Thiamine Deficiency Masquerading As Guillain-Barré Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11872742/ Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke’s Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pmc.ncbi.nlm.nih.gov/articles/PMC6429982/ Is there a Link between Vitamin B and Multiple Sclerosis? https://pubmed.ncbi.nlm.nih.gov/28875857/ Thiamine Deficiency and Neurological Symptoms in Patients with Hematological Cancer Receiving Chemotherapy: A Retrospective Analysis https://pmc.ncbi.nlm.nih.gov/articles/PMC8559079/ The Effects of Vitamin B in Depression https://pubmed.ncbi.nlm.nih.gov/27655070/ Thiamine Deficiency Neuropathy in a Patient with Malnutrition due to Melancholic Depression https://pmc.ncbi.nlm.nih.gov/articles/PMC10942818/ Myopathy in thiamine deficiency: analysis of a case https://pubmed.ncbi.nlm.nih.gov/16920153/ Neurologic complications of thiamine (B1) deficiency following bariatric surgery in adolescents https://pubmed.ncbi.nlm.nih.gov/38705013/ B Vitamins in the nervous system: Current knowledge of the biochemical modes of action and synergies of thiamine, pyridoxine, and cobalamin https://pubmed.ncbi.nlm.nih.gov/31490017/ Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults https://pmc.ncbi.nlm.nih.gov/articles/PMC6459027/ B Vitamin Deficiencies and Associated Neuropathies https://pmc.ncbi.nlm.nih.gov/articles/PMC12855320/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Update on Safety Profiles of Vitamins B1, B6, and B12: A Narrative Review https://pmc.ncbi.nlm.nih.gov/articles/PMC7764703/  
    • Heatherisle
      Hi  There’s been no mention of her adrenal glands as far as I know
    • Theresa2407
      Have they checked her Adrenal glands.    
    • Heatherisle
      Just an update on my daughter. She is still in hospital and getting quite depressed about everything. She had a CT scan of head and chest to rule out stroke in view of her symptoms. Thankfully there is no evidence of that so they now want to do an MRI to rule out MS so this is freaking her out and it’s not doing me much good either!!!They’re also going to do further blood tests to check vitamin levels. My husband and I are trying to reassure her the best we can that hopefully it’s just her body’s reaction to having the Vitamin B medication and it’s affecting her nervous system etc. Think the tingling has subsided but still having some lower back and pelvic pain and some leg pain. Thanks for reading and my apologies if I sound paranoid.
    • Aretaeus Cappadocia
      Your concerns are reasonable about the celiac risk aspect, and getting additional medical input is a good idea. Obviously I don't know the extent of your child's misalignment, but please don't think of it as just a cosmetic issue. Braces improve bite alignment and typically provide long term health benefits.
×
×
  • 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.