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 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
      131,188
    • Most Online (within 30 mins)
      7,748
    Leeila
    Newest Member
    Leeila
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...