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

DonnaMM

By DonnaMM
in Coping with Celiac Disease

Recommended Posts

DonnaMM Explorer
DonnaMM
Posted

I am kinda curious how long it takes others to feel the effects when they accidently take in gluten. My doctor wants to do some gluten challenges to confirm the diagnosis, but it seems like the cramping will start a few hours after I eat gluten, but the other symptoms such as severe pain and diarrhea take about two days. Anyone else have this long of a delay?

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

Celiac.com Sponsor (A8-M):


glutout Rookie
glutout
Posted

Yes, for me it's usually the next day. Sometimes it takes two. I get depressed and lethargic. If a headache is going to come, it is the first to show up--usually within hours! What's so weird about this "disease" is how different and similiar it is for everybody! :rolleyes:

steffanie Newbie
steffanie
Posted

I know this varies from person to person. But I may get cramping and severe bloating within 2-4 hours. I don't get diarrhea though, I get severe constipation which I feel for days after. There are sometimes I even throw up, which happens about once every 3 months. For me it can take 3-5 days to feel 100% better (sometimes even as long as a 7 days)

kareng Grand Master
kareng
Posted

Why does the docotor want you to poison yourself? :huh:

DonnaMM Explorer
DonnaMM
Posted
  • Author

I test negative for the disease but visually I have the disease and respond to the diet so he just wants to make sure that is the problem I can't do this for very longer though. I am dying!

Leper Messiah Apprentice
Leper Messiah
Posted

2 weeks of relentless fatigue for me :(

Celtic Queen Explorer
Celtic Queen
Posted

For me the diarreha starts the next day and then I have two weeks of depression, irritabiliity, brain fog, fatigue and apathy.

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

I test negative for the disease but visually I have the disease and respond to the diet so he just wants to make sure that is the problem I can't do this for very longer though. I am dying!

If you feel better on the diet, please continue. Only you know your limitations. Unless you want to pursue further testing, don't eat gluten if it makes you sick. You can conclude that you have a gluten intolerance of some level in the spectrum range. No need to satisfied your doctor's confidence or lack of, with your continued illness. Many, many people here are self diagnosed and feel quite comfortable in those shoes. :)

livelifelarge24 Enthusiast
livelifelarge24
Posted

I don't react right away. The next day the fatigue, lethargic feelings, brain fog, dizziness and extreme emotional upset start. Then I know it's coming. Usually the day after that the actual pain and stomach upset comes. But I know a girl who says she reacts immediately, ven while she's eating the culprit soni suppose it can be different for everyone.

Sarah B Apprentice
Sarah B
Posted

Yeah if you feel better on the diet stay on the diet. I had a GI doctor tell me I was crazy for staying on the diet because I had positive blood tests but negative scope (that was done 3 months later). I told my regular doctor, there was no way i was going back to eating gluten because I like being able to think, I do better in school. I've passed a test that I had taken literally 7 times and passed it with flying colors. I can actually run and push passed that wall I couldn't get passed and all my peers could.

Do what makes you feel good. Even if your doctor doesn't agree with you. YOu sometimes need to be your own advocate and tell the doctors what is going to happen.

Lori2 Contributor
Lori2
Posted

For me it takes three days for symptoms to show. Then another three days before they are better.

Leper Messiah Apprentice
Leper Messiah
Posted

Yeah if you feel better on the diet stay on the diet. I had a GI doctor tell me I was crazy for staying on the diet because I had positive blood tests but negative scope (that was done 3 months later). I told my regular doctor, there was no way i was going back to eating gluten because I like being able to think, I do better in school. I've passed a test that I had taken literally 7 times and passed it with flying colors. I can actually run and push passed that wall I couldn't get passed and all my peers could.

Do what makes you feel good. Even if your doctor doesn't agree with you. YOu sometimes need to be your own advocate and tell the doctors what is going to happen.

Amen to that, docs are so blinkered and full of their own gusto sometimes...no, actually, generally.

Reba32 Rookie
Reba32
Posted

I usually have a painful reaction within about 30 minutes and the after-effects can last for days.

aussiechick4jc Rookie
aussiechick4jc
Posted

Hi everyone,

Just wondering if someone can give me some input. I've been doing the gluten free thing for two weeks now (after numerous negative tests) and have noticed a hugh difference. I'm wondering how long you have to be on the diet before you notice a reaction if you eat gluten. Also, since being on the diet I've experienced at time extreme heartburn, maybe I'm doing something wrong.

Would love any advise or suggestions.

With regards - Karen

Bubba's Mom Enthusiast
Bubba's Mom
Posted

Heartburn, or GERD are something you'll deal with as you heal. It takes time. I know a lot of people feel great right away, but it's also normal to have it take a while before you feel better.

I recommend keeping a log of what you eat, and make a note if you have any symptoms. Sometimes it helps you narrow down things that just aren't agreeing with you right now. Digestive enzymes might help too?

I'm 3.5 months into gluten-free and still experience a lot of symptoms. I'm told it's normal for the amount of damage I have to my system.

Hang in there..and make sure you aren't getting cc from something.

Lisa Mentor
Lisa
Posted

I have been gluten free since 2004 and chocolate will get me every time, within a half hour, with regard to reflux.

Yes, keep a food log. And it took me up to six months before I realized I had a gluten reaction. All food created a reaction after first diagnosed. Dairy delayed my physical recovery for a while and then every thing settled down.

I am convinced that to master the diet takes a good six months. It can get complicated.

sandsurfgirl Collaborator
sandsurfgirl
Posted

I swear these doctors are flipping morons. They get their degrees from a clown university.

Please tell your doctor to piss off and do not do gluten challenges. There are some on this board who got extremely ill and damaged because their doctors did this to them. One of them is in a wheelchair now. As a matter of fact I think it's insane for them to keep you on gluten making you sicker for endoscopy after positive blood tests. I flat refused to stay on gluten for endoscopy once I got positive blood tests. There was no way. I had just been in the hospital from being so sick. That was crazy to me.

If gluten makes you sick you have celiac. Period. Gluten does not make people sick if they don't have it. My advin ce to you is, tell people you have celiac and tell them you got blood tests done to confirm it. That way no family and friends question you. If this doctor gives you grief find a new one. Tell the new doc you have celiac and don't explain the details. When you go to a new doc with a diagnosis already, they never ask to see the original blood tests. If they ask you how you got diagnosed, tell them blood tests and let it go. They write it on your chart and go about their business. Especially since you don't need drugs for this. Otherwise, people will question you and make your life more difficult. My son was negative on blood tests and was diagnosed by dietary response. When people ask, which is rare, I tell them it was his blood tests. It's none of their business anyway. And never ever call it gluten intolerance. People think intolerance is not a big deal or even think it's made up. Tell them you have an allergy to gluten and it's severe. The word allergy makes them think of throats closing up and makes them perk up and listen.

As for the person who posted that they had positive blood and negative endoscopy, once again the brilliant clown college doctors at work. When they do endoscopy they pick like 4 tiny spots to look at. That's awfully easy to just choose the wrong spots and miss the damaged bits. I think it's a joke that they call endoscopy the "gold standard." Yeah, the gold lining all those doctor's pockets when they do a surgical procedure on you instead of a simple blood test.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I would also add...the small intestine that is biopsied for a DX is long. The scope doesn't reach the whole thing. While it's more common to have the damage from Celiac near the duodenum where they take samples, you could have damage outside of the range of the scope. Some people get an "all clear" from negative biopsy when in fact, they do have Celiac disease.

It can't hurt anyone to try a gluten-free diet to see if they feel better when omitting it.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,558
    • Most Online (within 30 mins)
      7,748
    Ortega
    Newest Member
    Ortega
    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

    • Scott Adams
      gluten-free Oatmeal

      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
      My only proof

      By knitty kitty · Posted

      Well said, @Mari!
    • knitty kitty
      Shingles - Could It Be Related to Gluten/ Celiac

      By knitty kitty · Posted

      Hi, @Ginger38, I've had shingles in the past.  I understand how miserable you're feeling.   Not only do i have the chickenpox virus lurking about, I also have the cold sore virus that occasionally flares with a huge cold sore on my lip when stressed or exposed to gluten.  The virus lives dormant in the nerves on the left side of my face.  It causes Bell's Palsy (resulting in drooling).  The cold sore virus is also in my eye.  My eye swells up and my vision is diminished permanently whenever I have a flare, so it's of the utmost importance to keep flares away and treat them immediately if they do happen so I don't lose any more vision.   I take the amino acid supplement L-Lysine.  Lysine messes with the replication of viruses, which helps the body fight them off.   I haven't had an outbreak for several years until this year when exceptionally stressed and contaminated, it flared up again. Lysine has been shown to be beneficial in suppression of viruses like the cold sore virus (a herpetic virus), the chickenpox virus (also a herpetic virus), as well as the HIV virus, and even the Covid virus.   I also take additional Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) because Thiamine has antiviral properties as well.   For pain, a combination of Thiamine (like TTFD or Benfotiamine or Thiamine Hydrochloride), with B12 Cobalamine, and Pyridoxine B6 have been shown to have analgesic properties which relieve pain and neuropathy.    The combination of Thiamine B1, Pyridoxine B6 and Cobalamine B12 really does work to relieve pain.  I take it for back pain from crushed vertebrae in my back.  This combination also works on other pain and neuropathy.   I usually buy a supplement that combines all three and also Riboflavin B2 called EXPLUS online.  However, it's made in Japan and the price with the tariffs added makes it really expensive now.  But the combination of Thiamine B1, Pyridoxine B6 and B12 Cobalamine (and Riboflavin B2) still work even if taken separately.   I can't take Tylenol or ibuprofen because of stomach upsets.  But I can take the vitamin combination without side effects.  However, you can take the three vitamins at the same time as other pain relievers for added benefit.  The vitamins help other pain relievers work better. I hope you will try it.  Hopeful you'll feel better quickly. Interesting Reading: Thiamine, cobalamin, locally injected alone or combination for herpetic itching: a single-center randomized controlled trial https://pubmed.ncbi.nlm.nih.gov/23887347/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Analgesic and analgesia-potentiating action of B vitamins https://pubmed.ncbi.nlm.nih.gov/12799982/ A Narrative Review of Alternative Symptomatic Treatments for Herpes Simplex Virus https://pmc.ncbi.nlm.nih.gov/articles/PMC10301284/
    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
×
×
  • 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.