Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Celiac.com!
    eNewsletter
    Donate

Not Just Wheat

JoyfulGF

By JoyfulGF
in Related Issues & Disorders

Recommended Posts

JoyfulGF Apprentice
JoyfulGF
Posted

I was talking to a friend today about my bloodwork from a celiac test being a false positive. She and her husband own an organic dairy farm. She's purchased some wheat berries from a trusted organic farmer and she then grounds her own flour to make bread. She suggested that in a year or so that I try the bread because the false positive may be the cause (even when I have the symptoms) because of everything else that is added in with the wheat flour in the product and the junk done to the wheat (like genetic altering)

Anyone think this could be a possibility? I'm not trying to condone anyone's diagnoses at all, it's a very real thing. I'm just trying to find a link between genetic food alterations and diseases like Celiac.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted

I was talking to a friend today about my bloodwork from a celiac test being a false positive. She and her husband own an organic dairy farm. She's purchased some wheat berries from a trusted organic farmer and she then grounds her own flour to make bread. She suggested that in a year or so that I try the bread because the false positive may be the cause (even when I have the symptoms) because of everything else that is added in with the wheat flour in the product and the junk done to the wheat (like genetic altering)

Anyone think this could be a possibility? I'm not trying to condone anyone's diagnoses at all, it's a very real thing. I'm just trying to find a link between genetic food alterations and diseases like Celiac.

There are no false positives with Celiac testing.....only false negatives. If you tripped any of the tests in a Celiac panel, it means you have a problem with gluten on some level. It also does not matter what source the wheat comes from, wheat is wheat and will cause a reaction. It has nothing to do with genetically modified or added ingredients. Wheat berries or anything else containing wheat are not acceptable for a Celiac to consume.......sorry! :(

Link to comment
Share on other sites
JoyfulGF Apprentice
JoyfulGF
  • Author
Posted

There are no false positives with Celiac testing.....only false negatives. If you tripped any of the tests in a Celiac panel, it means you have a problem with gluten on some level. It also does not matter what source the wheat comes from, wheat is wheat and will cause a reaction. It has nothing to do with genetically modified or added ingredients. Wheat berries or anything else containing wheat are not acceptable for a Celiac to consume.......sorry! :(

How come those who are lactose intolerant can consume raw organic milk from grass fed cows? Lactose is a protein and so is gluten. Just trying to understand

Link to comment
Share on other sites
pricklypear1971 Community Regular
pricklypear1971
Posted

I was talking to a friend today about my bloodwork from a celiac test being a false positive. She and her husband own an organic dairy farm. She's purchased some wheat berries from a trusted organic farmer and she then grounds her own flour to make bread. She suggested that in a year or so that I try the bread because the false positive may be the cause (even when I have the symptoms) because of everything else that is added in with the wheat flour in the product and the junk done to the wheat (like genetic altering)

Anyone think this could be a possibility? I'm not trying to condone anyone's diagnoses at all, it's a very real thing. I'm just trying to find a link between genetic food alterations and diseases like Celiac.

There can be false positives on a blood test. Read here. Open Original Shared Link

Regarding the ability of a person with a gluten issue being able to eat any glutenous grain, even organic or heirloom, the answer is sadly "no".

Glutenous grains are glutenous grains. Period.

Humans have been altering their "natural" form since cultivation began. Unless you find a wheat grain in an iceberg I'm afraid you're out of luck finding an ancient grain in its original form, unaltered or modified by humans - and alas, that one will still be glutenous.

Once the autoimmune reaction has started it doesn't stop. Celiacs can heal, but you dont return to being able to eat glutenous grains. There are a few documented cases of Celiac remission but I'm afraid it's very, very rare.

Link to comment
Share on other sites
pricklypear1971 Community Regular
pricklypear1971
Posted

How come those who are lactose intolerant can consume raw organic milk from grass fed cows? Lactose is a protein and so is gluten. Just trying to understand

Here is some information about lactose intolerance: Open Original Shared Link

Perhaps organic raw grass fed cows milk is lower in lactase?

Link to comment
Share on other sites
rosetapper23 Explorer
rosetapper23
Posted

Lactose intolerance does not involve the same immune response as with celiac. With celiac, gluten causes the junctures between cells in the small intestine to remain open so that large molecules can pass through the intestinal wall, which causes an immune response. The two conditions are quite different.

Link to comment
Share on other sites
Skylark Collaborator
Skylark
Posted

Modern wheat and GMOs may be causing more people to develop celiac, but once you have the autoimmunity all wheat is toxic to you.

Lactose is NOT protein. Lactose is a sugar and the way lactose intolerance works is completely different from celiac. Lactose intolerance is not an immune response at all. It is a result of undigested sugar either feeding bacteria or getting into the colon and causing trouble.

The reason raw milk is tolerable for some people with lactose intolerance is because it has a little bit of lactase in it that will break down the sugar. The lactase (which IS a protein) gets destroyed in the pasteurization. Unfortunately there is no property of high-quality organic wheat that would make the gluten protein safe for people with celiac. It still has gluten and your immune system will still recognize it and hit the "self-destruct" button.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


JoyfulGF Apprentice
JoyfulGF
  • Author
Posted

Modern wheat and GMOs may be causing more people to develop celiac, but once you have the autoimmunity all wheat is toxic to you.

Lactose is NOT protein. Lactose is a sugar and the way lactose intolerance works is completely different from celiac. Lactose intolerance is not an immune response at all. It is a result of undigested sugar either feeding bacteria or getting into the colon and causing trouble.

The reason raw milk is tolerable for some people with lactose intolerance is because it has a little bit of lactase in it that will break down the sugar. The lactase (which IS a protein) gets destroyed in the pasteurization. Unfortunately there is no property of high-quality organic wheat that would make the gluten protein safe for people with celiac. It still has gluten and your immune system will still recognize it and hit the "self-destruct" button.

Oh ok, it's starting to make sense now. The fact that it's an auto-immune response as opposed to the undigested sugar makes a ton of sense!

Thank you Skylark for being patient with me and explaining everything! :)

Link to comment
Share on other sites
Skylark Collaborator
Skylark
Posted

You're welcome. Glad I'm making sense. :lol:

Link to comment
Share on other sites
bartfull Rising Star
bartfull
Posted

Skylark always has the best advice, explanations, and help. :)

Skylark, I think you should change your title to "Doctor of Glutenology". (But then again, most doctors are clueless compared to you.) :lol:

Link to comment
Share on other sites
Skylark Collaborator
Skylark
Posted

Skylark always has the best advice, explanations, and help. :)

Skylark, I think you should change your title to "Doctor of Glutenology". (But then again, most doctors are clueless compared to you.) :lol:

I'm not a doctor; I'm a scientist. B) I have to admit scientists tend to look down on doctors slightly because they didn't have to slog through a dissertation. :lol:

Link to comment
Share on other sites
JoyfulGF Apprentice
JoyfulGF
  • Author
Posted

Dr. Awesome called me tonight. He definitely thinks that I shouldn't go back to eating gluten, unless I absolutely want to (and I don't)

Anyway, he also said basically what you said Skylark about the lactose intolerance and Celiac, two different things.

Skylark, here's your stamp of approval for glutenologist!

Link to comment
Share on other sites
Skylark Collaborator
Skylark
Posted

Aww, thanks. :wub: Glad we had you good and ready to talk to him and get the most out of the conversation. :)

Link to comment
Share on other sites
JoyfulGF Apprentice
JoyfulGF
  • Author
Posted

Aww, thanks. :wub: Glad we had you good and ready to talk to him and get the most out of the conversation. :)

Thank you for giving me the wealth of information!

We talked for 20 minutes on the phone and he called at 7:15 this evening. I wish everyone could have him as a doctor.

He did say that there are false positives for every test, that's just the way things are.

Link to comment
Share on other sites

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. Suzi374
      - Suzi374 replied to Suzi374's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it.
    2. Suzi374
      - Suzi374 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lots of tests

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be be...
    3. Peace lily
      - Peace lily posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Would like to gain weight

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    4. Smith-Ronald
      - Smith-Ronald replied to Soleihey's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Lymph nodes

      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    5. Bayb
      - Bayb replied to Bayb's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Trying to read my lab results

      Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,224
    • Most Online (within 30 mins)
      7,748
    Suzi374
    Newest Member
    Suzi374
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      And I’m anaemic, however I’m also female and vegetarian. I had an iron trans a couple of years ago however it’s starting to dwindle and taking supplements doesn’t seem to work. I can’t seem to absorb it. 
    • Suzi374
      Lots of tests

      By Suzi374 · Posted

      Hi, I attended a neurologist appt last Tuesday, which I nearly cancelled, due to ongoing numbness and tingling in toes to mid foot. One of the first things he asked was ‘are you celiac’. I’m not. He thought all reflexes were ok but at the last minute decided on nerve conduction tests which were low normal. He was a little confused as he felt they should be better and tried a new set of probs, all the time, giving me multiple shocks which were not enjoyable lol. Anyway, he’s now ordered tests for myeloma, and all the vitaminy things that so many of you mention on here, also tests looking for autoimmune responses. I already have Hashimotos. Interestingly, to me, but maybe someone out there can relate or knows more than i do, although I was a nurse, but ED not ‘weird symptoms’  nurse. Anyway back to the interesting thing, I took duramine in 2013 to lose weight which caused a massive panic attack when I stopped taking it and half my hair fell out. I only took it for a week but it was horrible and I regret it. It triggered ongoing panic attacks which are horrendous. So I feel like I’m a bit crazy. Then in 2020 I had this sudden onset of horrible pain when trying to eat a cinnamon roll. It continued and I lost around 20 kgs. I had two gastroscopes and a colonoscopy and they were all normal. I scored a barium swallow and CT angiogram. All normal. The pain subsided a little but I was left with reflux and an awful feeling that I couldn’t get air when I ate some foods. This was not anxiety.  The anxiety was separate and I still maintain this. This was something to do with eating. It was like the air was thick but I wasn’t short of breath. I just had the sensation I was, then it triggered anxiety. Anyway, I had other weird things- couldn’t bend knees to shave legs in shower lol. Knees felt stiff and swollen but they weren’t. Knee WOUld swell up randomly but mri showed minimal issues. A bit of a meniscus degeneration but insignificant. Then the buzzing sensations in my head, the feeling like someone was stabbing me with something sharp. So now, I pre empted his tests, although I don’t think I’m celiac because it should have come up on gastroscopy, I’ve gone off gluten. Since Tuesday last week so 9 days. Since then I don’t appear to be as constipated, I realised I got through today without a nap and I’m not tired, maybe it’s just today and not related but I get very tired normally and sleep straight after work often, I can bend my knees and shave my legs lol, the buzzing vibrating has gone from my head, I had to call and ambulance as my heart decided we were off on a run, but we weren’t running and I’ve been a bit twitchy at bed time when trying to sleep, reflux is improving, I did get the weird suffocating feeling a bit when eating today but not as bad normall. Tingling and numbness still present and I felt like it moved up my legs a bit today but I’m a bit jittery. So I don’t know if it’s celiac disease or a gluten intolerance but I think, and it may be wishful thinking because my symptoms do make life a bit challenging, but maybe I’m feeling better. I don’t feel as cloudy. My thinking feels crisper. Like there’s no buzzing and I’m not fighting to break through the cloudiness now. I hope so much that this may help me feel a bit better moving forward. It would be a miracle as I really have struggled to work and parent and keep the house clean and I’m always anxious and exhausted.  If you get this far, please tell me if you you can relate to any of the above. Oh and tonsils out 5 years ago but before that antibiotics multiple times a year, sometimes intramuscular because they were so bad.  Op was meant to take 30 mins, it took 1.5 hours due to size of them. 
    • Peace lily
      Would like to gain weight

      By Peace lily · Posted

      Im still not gaining weight I’m on a gluten free diet . And still having issues with constapation started priobiocs figured it would help been over two weeks . I guess it’s going to be a long road for me .
    • Smith-Ronald
      Lymph nodes

      By Smith-Ronald · Posted

      Enlarged lymph nodes in neck and groin with celiac are not uncommon. They can take time to reduce even after going gluten-free. Monitoring is key.
    • Random.user556
      I think I might be celiac?

      By Random.user556 · Posted

      Hello! I’m sorry in advance for the long post!   Over the past few months I’ve been having a lot of issues with my stomach and have recently been referred to a Gastroenterologist. I’ve had stomach pain and issues since I was a baby. I had bad constipation (still do) and couldn’t tolerate most formula as a baby. When I was around 8 I started experiencing a lot of lower abdominal cramping (just below the belly button) and ended up missing a fair amount of school because of this. It would start about 2 hours after eating breakfast and I’d have lower abdominal cramps and feel nauseous . After a visit to my family doctor it was brushed off as separation anxiety.. or as the doctor put it “I was just a kid who wanted to stay home from school”. This stomach pain persisted all through my elementary and high school years. In fact I still experience it to this day and I’m now 24. Along with this my doctor believes I have a form of disautonomia called POTS (Postural Orthostatic Tachycardia Syndrome). I frequently feel unwell and exhausted. I also experience Raynaud’s phenomena especially during the winter months or when I’m sick. I also can not tolerate heat for the life of me.. although I’m not entirely convinced my symptoms are from POTS. The last few years I’ve also started experiencing frequent chronic sinus infections up to 5 a year most of which I require antibiotics for… Up until two years ago I have never had allergies or sinus problems. Back to my stomach issues… The last year I have been experiencing lots of stomach bloating and discomfort especially at night.. this has led to a few nights of 3am vomiting.. my doctor tested me for H. Pylori which was negative as well as full work ups to test my kidneys, liver, pancreas, gallbladder.. all of which were normal. At this time he also started me on Rabeprazole 20mg twice daily which is a Proton pump inhibitor (PPI) … as he believes it could be GERD. The PPI has not helped at all and I have since been moved down to once daily which I wait for a referral to a Gastroenterologist for an endoscopy as well as an abdominal ultrasound to verify I have no gallstones.. The pain I feel in my abdomen feels very heavy right around my bellybutton and frequently is accompanied by nausea and occasionally I also experience sharp stabbing like pain left of my belly button. I began tracking my symptoms, what I’m eating and bowel habits on an app called “My IBS” which track’s symptoms and flags foods that could be potential triggers.. all of my flagged potential triggers seem to be gluten related foods like pasta and breads. I asked to be tested for Celiac as I have an uncle with it. My doctor only sent for TtG IGA.. no other tests. My results came back negative at “<0.5 U/ml” the reference range being “ <12 U/Ml”. I am aware that total IGA should of been ordered as well but my doctor is confident we have ruled out celiac so I guess I will have to wait for the Gastroenterologist for more testing.. The other red flag for me is I have a rash that shows on both my knees and recently I have developed a similar rash behind both of my ears, on my neck and into my scalp.. there is dozens of small red and skin coloured lesions that sort of? resemble pimples but have a “head” and don’t pop (yes, i know don’t pop your pimples!) they are also itchy and sore.. I have tried washing and scrubbing them with antibacterial soap and body wash to no avail as well as ensuring I rinse my neck thoroughly after a shower, keeping my neck dry, frequently changing pillowcases and even keeping my hair off my neck as much as possible … it doesn’t have any effect on it.  In your experience does this sound like I could be experiencing celiac? I’ve debated going gluten free to see if my symptoms persist or begin to clear up.. any suggestions or help is appreciated! 
×
×
  • Create New...