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

1 And A Half Years On The Diet. Starting To Feel Sick All Over Again After Endoscopy Showed No Damage?

paige350z

By paige350z
in Super Sensitive People

Recommended Posts

paige350z Rookie
paige350z
Posted

Hi,

What a journey Celiac has taken me on. I was diagnosed about a year and a half ago after being stomach/intestinaly sick almost constantly. My doctor sent me to a gastroenterologist and I got the blood tests for celiac. I was positive. I started the diet, reading books, learning, and making small mistakes (and learning from them). I did really well for the first 6 months. Almost no slip ups, less time in the bathroom, the better things were. Doctor said that also gave good time for everything to restore and get back to normal inside. I live in a house with 4 other non celiacs. We are all very careful of my condition, but I am starting to wonder if we could be slipping up... at about 11 months into my diagnoses, I started feeling sick every once and a while again. As time went on, I have continued to get worse and worse...now a year and a half into my dianoses some foods are bothering me that I was sure are gluten free. It all kinda depends anymore. I'll eat a certified gluten free food one day and be fine, the next won't be. I know that can also depend on what else I am eating, though. Anyways, my doctor gave me an endoscopy and found that while I have a very sensitive and somewhat irritated stomach (which I've kindof always known.. but thats not enough to cause all the intestinal discomfort and runs), my small colon where the celiac is looked great as if I hadn't irritated it at all. I am so confused. Even my doctor is confused... (I'm going to get a second opinion as soon as I can find a good doctor) Could I be battling with something more than celiac? Or could it just be an extreme sensitivity? I do eat out often, but usually only at Chipotle.. it used to be fine until now sometimes I react and other times I don't. I am so tired of not being able to live my life to its fullest and instead being in the bathroom all day, or in bed with intestinal cramping and feeling sick. I need your guys's help. What should I do? Have any of you dealt with somehting like this?

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

Celiac.com Sponsor (A8-M):


catarific Contributor
catarific
Posted

Hi,

What a journey Celiac has taken me on. I was diagnosed about a year and a half ago after being stomach/intestinaly sick almost constantly. My doctor sent me to a gastroenterologist and I got the blood tests for celiac. I was positive. I started the diet, reading books, learning, and making small mistakes (and learning from them). I did really well for the first 6 months. Almost no slip ups, less time in the bathroom, the better things were. Doctor said that also gave good time for everything to restore and get back to normal inside. I live in a house with 4 other non celiacs. We are all very careful of my condition, but I am starting to wonder if we could be slipping up... at about 11 months into my diagnoses, I started feeling sick every once and a while again. As time went on, I have continued to get worse and worse...now a year and a half into my dianoses some foods are bothering me that I was sure are gluten free. It all kinda depends anymore. I'll eat a certified gluten free food one day and be fine, the next won't be. I know that can also depend on what else I am eating, though. Anyways, my doctor gave me an endoscopy and found that while I have a very sensitive and somewhat irritated stomach (which I've kindof always known.. but thats not enough to cause all the intestinal discomfort and runs), my small colon where the celiac is looked great as if I hadn't irritated it at all. I am so confused. Even my doctor is confused... (I'm going to get a second opinion as soon as I can find a good doctor) Could I be battling with something more than celiac? Or could it just be an extreme sensitivity? I do eat out often, but usually only at Chipotle.. it used to be fine until now sometimes I react and other times I don't. I am so tired of not being able to live my life to its fullest and instead being in the bathroom all day, or in bed with intestinal cramping and feeling sick. I need your guys's help. What should I do? Have any of you dealt with somehting like this?

Maybe you should also get an updated colonoscopy - who knows - maybe that might show up why you are having these recent problems. It is not out of the realm of possibility to have celiac and another form of GI distress - you might want to check it out.

Hope you are feeling better soon. :)

GFinDC Veteran
GFinDC
Posted

So, what are you eating? Lots of processed gluten free foods? If you are it might be an intolerance to one of the common ingredients in them, like soy, dairy, xanthan gum, corn, eggs, etc.

Also gluten free foods can have a small amount of gluten in them so if you eat a lot of them you can have a cumulative affect.

Sounds like a diet change may be in order.

paige350z Rookie
paige350z
Posted
  • Author

I have wondered if it could be a sensitivity to another ingredient in the foods... I know I have a dairy & citrus problem. What would be next for me to try to eliminate? Should I try to eliminate soy since that's in alot of foods I eat? I try to eat natural foods, veggies and fruits, but during the week I do eat alot of processed foods, I suppose. Maybe it could be the small ammounts of gluten in the gluten free foods adding up, too. How do you find out if a food that says "Gluten Free" on it is really gluten free? Hmm.. lots to consider!!

cahill Collaborator
cahill
Posted

So, what are you eating? Lots of processed gluten free foods? If you are it might be an intolerance to one of the common ingredients in them, like soy, dairy, xanthan gum, corn, eggs, etc.

Also gluten free foods can have a small amount of gluten in them so if you eat a lot of them you can have a cumulative affect.

Sounds like a diet change may be in order.

I agree with GFinDC , Maybe take a second look at what your eating.Consider that you may have become intolerant to nightshades,soy ect ..

mushroom Proficient
mushroom
Posted

Yes, soy is a big co-intolerance for celiacs. And it is in so many processed gluten free foods. That was the first one I had to eliminate.

eatmeat4good Enthusiast
eatmeat4good
Posted

I am another who had to get rid of soy.

Get rid of soy and see how you feel.

Also minimize "gluten free" foods.

It helped me feel better.

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

Celiac.com Sponsor (A8-M):


padma Newbie
padma
Posted

Hi. You are still really a newbie at this gluten issue. I am 10 years down the road and still have the same questions you do occasionally. There is a group on here for "super sensitive Celiacs" that might help you.

I, too, was starting to react this past year. After speaking with a super sensitive man it occurred to me that the gluten free food I was eating was not clear enough for me. I stopped eating all gluten free food and within 3 days my pains went away. Now I have been adding them back only one at a time. I test the same food for 3 or 4 days in a row. One brand, which I love the taste of, on the third day I started to get pain.

I have found a brand that is ok.... an organic corn flake product. The rest start pain.

I was already pretty tired of not being able to find organic gluten free food, so this has moved me in a better direction of eating organic brown rice and root vegetables instead of "white" gluten free non-organic bread and pasta.

I have had allergy blood tests and stay off of those foods. Even if I eat a little of any of them I don't get gluten symptoms.

I found a website about Dr. Edith Parcells and have been following her eating suggestions. She lived healthfully until she died at 106!

I have found it helpful to get to what I call a "zero" point... I go on a juice fast for a few days. My pain (if I am having it) goes away, then I can start over and add foods one at a time and see what bothers me.

I also take acidophilus every night and I take mangosteen juice with breakfast and lunch.

Hope this helps you.

Hi,

What a journey Celiac has taken me on. I was diagnosed about a year and a half ago after being stomach/intestinaly sick almost constantly. My doctor sent me to a gastroenterologist and I got the blood tests for celiac. I was positive. I started the diet, reading books, learning, and making small mistakes (and learning from them). I did really well for the first 6 months. Almost no slip ups, less time in the bathroom, the better things were. Doctor said that also gave good time for everything to restore and get back to normal inside. I live in a house with 4 other non celiacs. We are all very careful of my condition, but I am starting to wonder if we could be slipping up... at about 11 months into my diagnoses, I started feeling sick every once and a while again. As time went on, I have continued to get worse and worse...now a year and a half into my dianoses some foods are bothering me that I was sure are gluten free. It all kinda depends anymore. I'll eat a certified gluten free food one day and be fine, the next won't be.

paige350z Rookie
paige350z
Posted
  • Author

Hi. You are still really a newbie at this gluten issue. I am 10 years down the road and still have the same questions you do occasionally. There is a group on here for "super sensitive Celiacs" that might help you.

I, too, was starting to react this past year. After speaking with a super sensitive man it occurred to me that the gluten free food I was eating was not clear enough for me. I stopped eating all gluten free food and within 3 days my pains went away. Now I have been adding them back only one at a time. I test the same food for 3 or 4 days in a row. One brand, which I love the taste of, on the third day I started to get pain.

I have found a brand that is ok.... an organic corn flake product. The rest start pain.

I was already pretty tired of not being able to find organic gluten free food, so this has moved me in a better direction of eating organic brown rice and root vegetables instead of "white" gluten free non-organic bread and pasta.

I have had allergy blood tests and stay off of those foods. Even if I eat a little of any of them I don't get gluten symptoms.

I found a website about Dr. Edith Parcells and have been following her eating suggestions. She lived healthfully until she died at 106!

I have found it helpful to get to what I call a "zero" point... I go on a juice fast for a few days. My pain (if I am having it) goes away, then I can start over and add foods one at a time and see what bothers me.

I also take acidophilus every night and I take mangosteen juice with breakfast and lunch.

Hope this helps you.

Great information from all of you.. It's so overwhelming, having just gotton rid of all gluten, to now take on re-cleansing my diet of other possible irritants.

I will definetly look up Dr. Edith Parcells and that diet. Seems like for me and my on the go lifestyle, I often buy the "Gluten Free" brand foods to use as snacks.. I think I got to carried away with the wide range of not-so-gluten free products and I will try to eliminate those. What are good ways to replace them? Is buying "Gluten Free Flours" ok? Maybe I can bake my own bars, and snacks for on the go. And also have a chat with my family to step it up and lessen the risks of cc.

I really appreciate all the help so far!! Please, any advice anyone has to offer, I'm all ears. I just want to feel better!

dilettantesteph Collaborator
dilettantesteph
Posted

I am sensitive to very low amounts of gluten. So is my son. We tried for a year to share a house with gluten eaters. Finally they had to go gluten free at home because my son and I kept getting sick. No matter what precautions we took, we got sick. We also had to stop eating at restaurants. We got sensitive to lower levels as time went on. Food that formerly was O.K. started bothering us. We don't eat processed grains at all. I buy grains whole and sort and wash before eating.

If I were you I would go on a whole foods grain free diet. Eat only meats and produce and see if you improve. Than you can start adding foods one a week to see what bothers you. Keep a food diary. Good luck.

I saw a talk by Dr. Peter Green in which he talked about endoscopies. He said that they had done a study in which they looked at the number of biopsies taken vs whether or not a positive biopsy was found. It went up until they got to 8, I think it was. The average number usually taken was 2. In other words, many biopsies are negative because not enough samples are taken, not because the persons intestine is good. The intestine is really long. If the whole thing isn't damaged, and yours shouldn't be if you are mainly gluten free, then it is easy to miss the damaged part when taking a biopsy.

paige350z Rookie
paige350z
Posted
  • Author

I saw a talk by Dr. Peter Green in which he talked about endoscopies. He said that they had done a study in which they looked at the number of biopsies taken vs whether or not a positive biopsy was found. It went up until they got to 8, I think it was. The average number usually taken was 2. In other words, many biopsies are negative because not enough samples are taken, not because the persons intestine is good. The intestine is really long. If the whole thing isn't damaged, and yours shouldn't be if you are mainly gluten free, then it is easy to miss the damaged part when taking a biopsy.

That is good to know! Really eases me to know that just because the endoscopy didn't show anything, doesn't mean there isn't celiac or that there isn't damage. My doctor hasn't exactly been helpful during this process, so, It wouldn't suprise me if there is damage and it just wasn't caught.

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 SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease. Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease. Though having the genes for Celiac...
    2. trents
      - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining...
    3. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    4. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

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

      Son's legs shaking

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

  • Member Statistics

    • Total Members
      132,868
    • Most Online (within 30 mins)
      7,748
    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      High TTG-IgG and Normal TTG-IgA

      By knitty kitty · Posted

      @SamAlvi, It's common with anemia to have a lower tTg IgA antibodies than DGP IgG ones, but your high DGP IgG scores still point to Celiac disease.   Since a gluten challenge would pose further health damage, you may want to ask for a DNA test to see if you have any of the commonly known genes for Celiac disease.  Though having the genes for Celiac is not diagnostic in and of itself, taken with the antibody tests, the anemia and your reaction to gluten, it may be a confirmation you have Celiac disease.   Do discuss Gastrointestinal Beriberi with your doctors.  In Celiac disease, Gastrointestinal Beriberi is frequently overlooked by doctors.  The digestive system can be affected by localized Thiamine deficiency which causes symptoms consistent with yours.  Correction of nutritional deficiencies quickly is beneficial.  Benfotiamine, a form of thiamine, helps improve intestinal health.  All eight B vitamins, including Thiamine (Benfotiamine), should be supplemented because they all work together.   The B vitamins are needed in addition to iron to correct anemia.   Hope this helps!  Keep us posted on your progress!
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      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
      Son's legs shaking

      By lizzie42 · Posted

      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? 
×
×
  • 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.