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

Gluten Intolerant Vs. Celiac

Guest cassidy

By Guest cassidy
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

Recommended Posts

Guest cassidy
Guest cassidy
Posted

I had a negative blood test and negative biopsy (5 weeks gluten free), so I may not have Celiac. I know I have a 100% positive result from the diet, so I know there is a reason that I can't eat gluten. After about 7 weeks gluten free I really feel great. No more gas, bloating, D, stomach pain after eating, brain fog, shakiness, irritability, headaches.

My question is that when people are talking about how long it takes for their symptoms to go away after going gluten free, does it take longer if you have Celiac versus a gluten intolerance? If you have Celiac, then you have intestinal damage that has to heal (right?). If you are intolerant, do you have any damage that has to heal, or do you just get better because you aren't constantly feeding your body something that it can't process?

I am wondering if there are other things that I didn't realize are symptoms, and may go away over time, if I still need to heal. Like Gerd, I know people have said it is related. My gerd hasn't gotten any better so I don't know if mine is related. I'm wondering if after a year gluten free if it will just go away (I know that no one can predict this)?

Also, do people who are intolerant have different symptoms than those that have Celiac. I know most people have the usual abdominal symptoms, but the other the not-so-common symptoms like teeth with enamel problems (I had that) and gerd?

None of this will change my dedication to my diet, but I'm curious.

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
.

My question is that when people are talking about how long it takes for their symptoms to go away after going gluten free, does it take longer if you have Celiac versus a gluten intolerance? If you have Celiac, then you have intestinal damage that has to heal (right?). If you are intolerant, do you have any damage that has to heal, or do you just get better because you aren't constantly feeding your body something that it can't process?

You can have Celiac and not have much intestinal damage or none at all. This could be the case if you are only in the beginning stages of the disease....damage may not have occurred yet or it may have been at a minimun alllowing you to heal quickly. Gluten Intolerance can cause intestinal damage but will not flatten the villi like what is seen in Celiac. Gluten intolerance can cause leaky gut and still lead to malabsorption and other food intolerances.

I am wondering if there are other things that I didn't realize are symptoms, and may go away over time, if I still need to heal. Like Gerd, I know people have said it is related. My gerd hasn't gotten any better so I don't know if mine is related. I'm wondering if after a year gluten free if it will just go away (I know that no one can predict this)?

It may or may not go away. Only time will tell.

Also, do people who are intolerant have different symptoms than those that have Celiac. I know most people have the usual abdominal symptoms, but the other the not-so-common symptoms like teeth with enamel problems (I had that) and gerd?

Symptoms alone cannot determine whether you have Celiac or an intolerance. The symptoms can be caused by either. You can always get gene testing to determine if you carry a Celiac gene. This still wont tell you if you have Celiac or not but if you did carry a gene and are symptomatic when eating gluten it would be safe to assume that continuing to consume gluten will eventually lead to Celiac....if it hasnt already.

tiredofdoctors Enthusiast
tiredofdoctors
Posted

I agree with Rachel. I'm gluten intolerant, but because I produce other antibodies against perkinje cells, it is affecting the my brain, eyes and the nerves in my hands & feet. I'm celiac negative, but it just affects me in a different way, so I'm WAY gluten-free.

Felidae Enthusiast
Felidae
Posted
My question is that when people are talking about how long it takes for their symptoms to go away after going gluten free, does it take longer if you have Celiac versus a gluten intolerance? If you have Celiac, then you have intestinal damage that has to heal (right?). If you are intolerant, do you have any damage that has to heal, or do you just get better because you aren't constantly feeding your body something that it can't process?

Also, do people who are intolerant have different symptoms than those that have Celiac. I know most people have the usual abdominal symptoms, but the other the not-so-common symptoms like teeth with enamel problems (I had that) and gerd?

I had many of the same symptoms as you and they eventually went away on the gluten-free diet. I don't know if I have celiac, but I am definitely gluten intolerant. It took about four months before I had normal bms, even though I had great improvements in all of my symptoms immediately. At four months I had to eliminate all dairy also. And, at six or seven months I would say I was as normal as a person can be. So, it may take time, but it is so worth it.

I had severely receding gums for the past six years and I also had a bad dentist who said don't worry about it. My current and great dentist mentioned something about my enamel, I don't remember what it was. My gums seem to have slowed their recession. My hair was falling out, not anymore. I had migraines and anxiety (probably due to constant D), not anymore.

Claire Collaborator
Claire
Posted

I will drop in here and add comments to follow Lynne's.

A new GI recently told me what I have been thinking (out loud a lot) that gluten intolerance and celiac are two sides of the same coin. You can have intestinal damage with gluten intolerance and there are diagnosed celiacs who have none. The doctor felt that one day these two genetic disorders will be considered the same thing. Goodness, even celiacs don't all have the same symptoms.

Like Lynne, I have the neurological problems. I do not have the Celiac genes. However this new GI specialist was quick to point out that there are other genes being identified with celiac that are not yet being tested - so all a negative test proves is that you don't have the genes that are currently available for testing.

I recently went through SCA testing - but only 9 out of 26 possibles can be tested, I was negative for the 9.

Note that the gluten intolerance seems to be more correlated to neurological disorder than does celiac - though that is not a complete exclusion of celiac in neuro problems.

I get the small intestine biopsy at the end of this month. Hopefully if there was any damage it will not have healed. That takes upwards to two years. Then of course, if I am gluten intolerant, there may be no damage and without it no doctor will diagnose Celiac. I will be in the same spot as I was with the SCA. Claire

tiredofdoctors Enthusiast
tiredofdoctors
Posted

The up-side to your story, though, Claire, is that you are a reasonable, educated person, and you know your body VERY WELL. So, regardless of what "label" they are going to paste onto your chart, in your heart, you know that you're gluten intolerant, given the symptoms that you have. I have so much admiration for you -- for your knowledge, for your perserverance, and for your ability to continue to remain objective about a VERY emotional issue. You are remarkable. And that's really all you need to remember . . .

Guest cassidy
Guest cassidy
Posted

My mother has dh, so I'm wondering the odds of being gluten intolerant, versus celiac since I know that celiac is genetic, and I don't know if intolerance is. I don't know if that would be a weird coincidence or not, but I did have a negative blood test and biopsy. I guess I'm still on the right track with being gluten-free and I look forward to feeling even better over time.

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

Celiac.com Sponsor (A8-M):


Claire Collaborator
Claire
Posted
My mother has dh, so I'm wondering the odds of being gluten intolerant, versus celiac since I know that celiac is genetic, and I don't know if intolerance is. I don't know if that would be a weird coincidence or not, but I did have a negative blood test and biopsy. I guess I'm still on the right track with being gluten-free and I look forward to feeling even better over time.

Gluten intolerance is also genetic. I wrote in another thread that my new GI specialist believes that gluten intolerance and celiac are just different manifistations of the same inherited disorder. Someday, hopefully, it will be defined that way. This subject is mentioned in Dangerous Grains. Claire

The up-side to your story, though, Claire, is that you are a reasonable, educated person, and you know your body VERY WELL. So, regardless of what "label" they are going to paste onto your chart, in your heart, you know that you're gluten intolerant, given the symptoms that you have. I have so much admiration for you -- for your knowledge, for your perserverance, and for your ability to continue to remain objective about a VERY emotional issue. You are remarkable. And that's really all you need to remember . . .

Thank you, cheer leader!

I really would like a diagnosis - especially if this is a genetic problem. I will never get one family member to be tested without a solid diagnosis. I probably won't get many to be tested anyway - even with one. I raised ostriches! Imagine that - me who wants to know every detail - has children who don't want to know anything unless it is happy news or the Steelers won. Claire

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. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go! I'm certain you'll feel much better. Yes, supplementation is a good idea even if you're healing and gluten free. The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities...
    2. NanceK
      - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      10

      My only proof

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get cal...
    3. knitty kitty
      - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms. The tTg IgA antibodies are made in the intestines. While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten...
    4. Trish G
      - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

      Thanks, that's a great addition that I hadn't thought of.
    5. trents
      - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,358
    • Most Online (within 30 mins)
      7,748
    Lorna Wynter
    Newest Member
    Lorna Wynter
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      My only proof

      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      Is this celiac?

      By knitty kitty · Posted

      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
×
×
  • 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.