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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?

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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.

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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.

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