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

Glutened?

SpiralArrow

Recommended Posts

SpiralArrow Rookie
SpiralArrow
Posted

Hello everyone. Long story short, I have to wait until september to see a GI and in the meantime I have been unsure about whether to keep eating gluten for further testing, or to start gluten free immedietly. I know I've risked ruining my testing by doing this, but I've been trying gluten free for about 3-4 weeks, though I would call it "gluten-light" because I've been making a few little mistakes here and there. But for the most part I was beginning to feel much better. I was sleeping better, my skin cleared up, I was gaining back some muscle and put on a little healthy weight, my BMs were beginning to look more normal, etc. If I did become accidentally glutened, the worst I would experience would be bloating, ratty mood swings and constipation that would last a few days.

Two days ago I began to worry about what would happen if I couldn't get a proper diagnosis, (I already had a blood test that came back negative) so I thought "maybe I'll just eat one item of gluteny food every couple of days now until September." So I decided to have a little chocolate chip muffin.

STUPID IDEA.

My stomach did what I expected, bloated up, and after a while my head began to feel foggy. All familiar sensations so I thought I could handle it. But as the day went on the brain fog became progressively worse and I started to develop strange pains in my abdomen, which was accompanied by nausea. These became so intense that pain relief didn't seem to aleviate any of the discomfort at all, and by the evening even water seemed to be making things worse.

Luckily I was able to sleep through the first night, and I woke up feeling a bit better. The nausea was gone, the only problem I has was my stomach felt as if I had done 1000 situps. But still, I got up and tried to get on with my day, and had a light gluten-free breakfast. But this seemed to trigger off the nausea and the pain again, only this time it was unbearably painful. I spent most of the day doubled over or curled up crying on my bed. There was no position I could get into that helped. And I couldn't stomach water at all.

I got no sleep whatsoever, and now I'm awake on the third day feeling terrible. The only good thing that happened is I've been able to pass some BMs this morning and (sorry if tmi!) apart from them looking the way they usually do when I eat gluten, there is no blood or anything like that. Some of the pain has lessened and I feel slightly more mobile, but I still feel nauseus and am still experiencing pain beneath my belly button. I'm too worried to try and eat or drink anything.

The pain has been so intense I really am scared, I've never had a reaction this bad before. Does this sound like the typical scenario where if someone avoids gluten for a period of time, reactions to gluten will be a lot more severe? Or does it sound like anything else is going on? I'm considering visiting a hospital if I don't feel much better today, I can't handle the pain.

If this is a gluten reaction then I'm definitely NEVER eating gluten ever again and there is no way I'm ever going to do a gluten challenge.

If anyone could offer some advice on how to ease the pain, or just some friendly words I'd appreciate it. :(

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

Celiac.com Sponsor (A8-M):


kellynolan82 Explorer
kellynolan82
Posted

I feel your pain. :(

You're certainly not alone. I would say that the best thing to do now is remain gluten free. The biopsy/endoscopy/colonoscopy really isn't necessary, in my own opinion (as long as you're prepared to adopt a 100% gluten free lifestyle from this day forward).

If you do wish to go ahead, however, you will most likely need to remain on a gluten-containing diet and partake in the gluten challenge to gain accurate results.

Many individuals react to gluten far worse once on the gluten free diet. I know I myself do as well.

I wish you well. :)

zus888 Contributor
zus888
Posted

If it's any consolation, you might be nearing the end of your episode. From what I've read on here, most people's reactions last 4-5 days, though some are shorter and some can be a lot longer. Also, what you describe is similar to what I have read here from others. I don't get digestive responses, so I can't relate from experience, but I do know that your experience sounds very much like many others on this board who have been accidentally glutened.

Hope you start feeling better soon!!

ainembol Newbie
ainembol
Posted

I don't know why but fish oil helps me feel better when I accidentally contaminate myself.

Hello everyone. Long story short, I have to wait until september to see a GI and in the meantime I have been unsure about whether to keep eating gluten for further testing, or to start gluten free immedietly. I know I've risked ruining my testing by doing this, but I've been trying gluten free for about 3-4 weeks, though I would call it "gluten-light" because I've been making a few little mistakes here and there. But for the most part I was beginning to feel much better. I was sleeping better, my skin cleared up, I was gaining back some muscle and put on a little healthy weight, my BMs were beginning to look more normal, etc. If I did become accidentally glutened, the worst I would experience would be bloating, ratty mood swings and constipation that would last a few days.

Two days ago I began to worry about what would happen if I couldn't get a proper diagnosis, (I already had a blood test that came back negative) so I thought "maybe I'll just eat one item of gluteny food every couple of days now until September." So I decided to have a little chocolate chip muffin.

STUPID IDEA.

My stomach did what I expected, bloated up, and after a while my head began to feel foggy. All familiar sensations so I thought I could handle it. But as the day went on the brain fog became progressively worse and I started to develop strange pains in my abdomen, which was accompanied by nausea. These became so intense that pain relief didn't seem to aleviate any of the discomfort at all, and by the evening even water seemed to be making things worse.

Luckily I was able to sleep through the first night, and I woke up feeling a bit better. The nausea was gone, the only problem I has was my stomach felt as if I had done 1000 situps. But still, I got up and tried to get on with my day, and had a light gluten-free breakfast. But this seemed to trigger off the nausea and the pain again, only this time it was unbearably painful. I spent most of the day doubled over or curled up crying on my bed. There was no position I could get into that helped. And I couldn't stomach water at all.

I got no sleep whatsoever, and now I'm awake on the third day feeling terrible. The only good thing that happened is I've been able to pass some BMs this morning and (sorry if tmi!) apart from them looking the way they usually do when I eat gluten, there is no blood or anything like that. Some of the pain has lessened and I feel slightly more mobile, but I still feel nauseus and am still experiencing pain beneath my belly button. I'm too worried to try and eat or drink anything.

The pain has been so intense I really am scared, I've never had a reaction this bad before. Does this sound like the typical scenario where if someone avoids gluten for a period of time, reactions to gluten will be a lot more severe? Or does it sound like anything else is going on? I'm considering visiting a hospital if I don't feel much better today, I can't handle the pain.

If this is a gluten reaction then I'm definitely NEVER eating gluten ever again and there is no way I'm ever going to do a gluten challenge.

If anyone could offer some advice on how to ease the pain, or just some friendly words I'd appreciate it. :(

ravenwoodglass Mentor
ravenwoodglass
Posted

The good news is you are likely on the downside of your reaction and should be feeling better soon. The bad news is that to get any testing done eating one gluten item every two or three days isn't going to do it. You need to eat the equivalent of 3 to 4 slices of bread a day for up to 3 months if you have had time gluten free or gluten light. That said having symptoms clear on the diet and return with a challenge is pretty diagnostic in itself.

Skylark Collaborator
Skylark
Posted

I think you should call your doctor. Pain that bad might be gluten but I'd want to be sure.

SpiralArrow Rookie
SpiralArrow
Posted
  • Author

Thanks for the replies everyone. :) I'm a bit of a hypochondriac and having other's input tends to stop me from fearing the worst.

The pain hasn't subsided, but I did get my appetite back yesterday and I stopped feeling sick. Problem is even the gluten-free food is now causing the pain to intensify. I just came back from my doctor who checked my stomach, and she has just given me pain killers and is going to get me a dietitian while I wait for my GI in September. She's advised me to forget worrying about testing and to just stick to foods that I know don't upset me. I was also told that the specialist I've been booked to see is one of the best in our area.

That's great, but I still can't eat anything and I'm still worried. I've spent most of the last few days curled up in bed and it's painful to walk around. Is this really how bad gluten can be? I asked several times could it be anything that requires immediate attention and she said no. I wish I could fully believe her. I don't really know where to go from here now.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Thanks for the replies everyone. :) I'm a bit of a hypochondriac and having other's input tends to stop me from fearing the worst.

The pain hasn't subsided, but I did get my appetite back yesterday and I stopped feeling sick. Problem is even the gluten-free food is now causing the pain to intensify. I just came back from my doctor who checked my stomach, and she has just given me pain killers and is going to get me a dietitian while I wait for my GI in September. She's advised me to forget worrying about testing and to just stick to foods that I know don't upset me. I was also told that the specialist I've been booked to see is one of the best in our area.

That's great, but I still can't eat anything and I'm still worried. I've spent most of the last few days curled up in bed and it's painful to walk around. Is this really how bad gluten can be? I asked several times could it be anything that requires immediate attention and she said no. I wish I could fully believe her. I don't really know where to go from here now.

If you are still in that much pain after this amount of time and you feel your doctor is not addressing it perhaps a second opinion is in order. While doctors can be slow to recognize celiac they can also have a tendency to attribute everything that comes along after as being celiac related. If you don't trust this doctor it may be time to find another one.

SpiralArrow Rookie
SpiralArrow
Posted
  • Author

If you are still in that much pain after this amount of time and you feel your doctor is not addressing it perhaps a second opinion is in order. While doctors can be slow to recognize celiac they can also have a tendency to attribute everything that comes along after as being celiac related. If you don't trust this doctor it may be time to find another one.

That's the thing, my doctor still refuses to say the words "it does sound like gluten", even though I have given her a lot of evidence now that says otherwise. She definitely thinks my problems are caused by something in my diet, but seemed keen to blame eggs. :blink: Even though I know (at least for now) that eggs don't cause me any problems.

You're all so kind, I don't mean to keep coming back to complain but now I am dealing with a seperate problem. I took two Zapain tablets that I was prescribed this morning and within minutes I was having terrible vertigo, nausea, numbness and I've been even more of a wreck today than I was without the pain relief! Turns out I might have an issue with Codeine. At least I could attempt to eat food yesterday, this really isn't my week. I'm probably going to have to get a second opinion before the week is out, thanks again for responding.

ravenwoodglass Mentor
ravenwoodglass
Posted

That's the thing, my doctor still refuses to say the words "it does sound like gluten", even though I have given her a lot of evidence now that says otherwise. She definitely thinks my problems are caused by something in my diet, but seemed keen to blame eggs. :blink: Even though I know (at least for now) that eggs don't cause me any problems.

You're all so kind, I don't mean to keep coming back to complain but now I am dealing with a seperate problem. I took two Zapain tablets that I was prescribed this morning and within minutes I was having terrible vertigo, nausea, numbness and I've been even more of a wreck today than I was without the pain relief! Turns out I might have an issue with Codeine. At least I could attempt to eat food yesterday, this really isn't my week. I'm probably going to have to get a second opinion before the week is out, thanks again for responding.

Did you make sure the med is gluten free? Some pharmaceys will check for you but some of us go right to the maker. If you have the bottle somewhere, likely in real tiny letters is the name of the company that makes it. If you enter their name and the words contact information in a search engine you should be able to find a link that will tell you how to call them. I usually call by phone rather than email as it seems to get a quicker answer.

SpiralArrow Rookie
SpiralArrow
Posted
  • Author

Don't worry, I did indeed check beforehand. It's been a few days now and the pain has eased off a lot and I can eat food again. I'm just dealing with feeling a bit weak and fragile. Unless my specialist finds anything else in the future, I'm going to assume that this was an example of one of my "bad" reactions to gluten! At least I learnt my lesson, now I have to reverse the damage and somehow gain the 5 pounds back that I lost.

T.H. Community Regular
T.H.
Posted

It's been a few days now and the pain has eased off a lot and I can eat food again.

Oh, very glad to know you are improving! My daughter's reaction to gluten does not seem as intense, pain-wise. However, when she's been glutened, everything that goes in her stomach for the next few days will set off the pain, almost exactly like you mentioned. She hates to eat or drink for days afterward, because she knows it's going to hurt. :-(

So sorry you had to go through that! And also...if the pain is really, really bad, you might want to consider a doctor again, even if it was gluten. I know and have heard of a few people whose reaction to gluten is so bad that they need hospitalization. Most doctors don't have a clue that's even a possibility, so even if they are giving you the brush off, I'd say listen to yourself and tell them to shove it and check you anyway, if you are in immense pain.

God....I am just waiting for the miraculous day virtual reality exists and we can let these folks feel what it's actually like for us. Somehow, I bet they won't be as dismissive after that!

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 lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Son's legs shaking

      @lizzie42, You're being a good mom, seeking answers for your son. Cheers! Subclinical thiamine deficiency commonly occurs with anemia. An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal. Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps...
    2. Scott Adams
      - Scott Adams replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Bob red mill gluten free oats

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this...
    3. 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...
    4. 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...
    5. 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.
  • 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):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      @lizzie42, You're being a good mom, seeking answers for your son.  Cheers! Subclinical thiamine deficiency commonly occurs with anemia.  An outright Thiamine deficiency can be precipitated by the consumption of a high carbohydrate meal.   Symptoms of Thiamine deficiency include feeling shakey or wobbly in the legs, muscle weakness or cramps, as well as aggression and irritability, confusion, mood swings and behavior changes.  Thiamine is essential to the production of neurotransmitters like serotonin and dopamine which keep us calm and rational.   @Jsingh, histamine intolerance is also a symptom of Thiamine deficiency.  Thiamine is needed to prevent mast cells from releasing histamine at the slightest provocation as is seen in histamine intolerance.  Thiamine and the other B vitamins and Vitamin C are needed to clear histamine from the body.  Without sufficient thiamine and other B vitamins to clear it, the histamine builds up.  High histamine levels can change behavior, too.  High histamine levels are found in the brains of patients with schizophrenia.  Thiamine deficiency can also cause extreme hunger or conversely anorexia.   High carbohydrate meals can precipitate thiamine deficiency because additional thiamine is required to process carbohydrates for the body to use as fuel.  The more carbohydrates one eats daily, the more one needs additional thiamine above the RDA.  Thiamine is water soluble, safe and nontoxic even in high doses. Keep in mind that gluten-free processed foods like cookies and such are not required to be fortified and enriched with vitamins and minerals like their gluten containing counterparts are.  Limit processed gluten-free foods.  They are often full of empty calories and unhealthy saturated fats and additives, and are high in histamine or histamine release triggers.  It's time you bought your own vitamins to supplement what is not being absorbed due to malabsorption of Celiac disease.  Benfotiamine is a form of Thiamine that has been shown to improve intestinal health as well as brain function. Do talk to your doctors and dieticians about supplementing with the essential vitamins and minerals while your children are growing up gluten free.  Serve nutritionally dense foods.  Meats and liver are great sources of B vitamins and minerals. Hope this helps!  Keep us posted on your progress!
    • Scott Adams
      Bob red mill gluten free oats

      By Scott Adams · Posted

      Oats naturally contain a protein called avenin, which is similar to the gluten proteins found in wheat, barley, and rye. While avenin is generally considered safe for most people with celiac disease, some individuals, around 5-10% of celiacs, may also have sensitivity to avenin, leading to symptoms similar to gluten exposure. You may fall into this category, and eliminating them is the best way to figure this out. Some people substitute gluten-free quinoa flakes for oats if they want a hot cereal substitute. If you are interested in summaries of scientific publications on the topic of oats and celiac disease, we have an entire category dedicated to it which is here: https://www.celiac.com/celiac-disease/oats-and-celiac-disease-are-they-gluten-free/   
    • 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.
×
×
  • 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.