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Speed Of Onset Of Symptoms


Dinbren

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Dinbren Newbie

Hi all:

I had suspected I had Celiac for sometime. First test was negative. Second, after pneumonia, 6 miscarriages and 2 years of intolerable stomach upsets was very positive. Although I think, as many of you have said that I had it for years.

For the last two years particularly I felt like it was 4 o clock in the morning at all times because I was so tired. Partially iron no doubt.

My question is --- learning to stay gluten free is incredibly difficult. After six months and one fall off the wagon (because I didn't realize that many chinese restaurants use wheat flour to thicken their sauce) I am feeling pretty good again.

My question is, how quickly after taking a trace of gluten - eg in cross-contaminated food do you realize you have done so? And, how quickly do the symptoms like fatique and stomach problems come back. While gluten free I am one of the very lucky people who seems to be 100% ok but I am finding that I am suddenly feeling very tired - like today - and last night I ate out at a Mexican restaurant - carefully informed the chef but not sure it worked this time!

Am I just tired or can Celiac come on so quickly?

Thanks very much to a newbie to the issue.


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aikiducky Apprentice

Yes its possible that you got glutened. Some people react immediately, some take a few hours and some only react the next day. I usually notice in 5-6 hours or so if I accidentally eat something with gluten.

You might feel tired for a while. I usually feel completely normal two.three weeks after a glutening, but I'm tolerably ok after a few days.

Pauliina

mouse Enthusiast

I always have an energy problem, so I can't use that as an answer for me. In the beginning I reacted in 20 minutes. I now react within 3 to 4 bites if it is gluten. If it is cross contamination, it takes 20 minutes for me to know. I get such severe heartburn that I think I am having a heart attack. Then the cramps start.

RBC Newbie
Hi all:

I had suspected I had Celiac for sometime. First test was negative. Second, after pneumonia, 6 miscarriages and 2 years of intolerable stomach upsets was very positive. Although I think, as many of you have said that I had it for years.

For the last two years particularly I felt like it was 4 o clock in the morning at all times because I was so tired. Partially iron no doubt.

My question is --- learning to stay gluten free is incredibly difficult. After six months and one fall off the wagon (because I didn't realize that many chinese restaurants use wheat flour to thicken their sauce) I am feeling pretty good again.

My question is, how quickly after taking a trace of gluten - eg in cross-contaminated food do you realize you have done so? And, how quickly do the symptoms like fatique and stomach problems come back. While gluten free I am one of the very lucky people who seems to be 100% ok but I am finding that I am suddenly feeling very tired - like today - and last night I ate out at a Mexican restaurant - carefully informed the chef but not sure it worked this time!

Am I just tired or can Celiac come on so quickly?

Thanks very much to a newbie to the issue.

I experienced similar problems...I was beyond tired all the time. Now that I am better, I can look back and realize how horribly tired I was. I just thought it was normal. In regards to how fast gluten can come on...I think that the more you deprive your body of it, the more intense/faster it will come on. A year ago when I ws diagnosed, I KNOW now that I was eating gluten and it merely affected me the morning after. Now, since I have been a bit more diligent with my diet, I can feel it within hours. I actually got very sick this past Friday and had horrible chest pain, and heart palpitations...and then the dr came the next morning. I felt sick all weekend to the point where I had to stay in bed. Finally about 48 hrs later I felt better/tolerable. However, I have been very anxious this week and have head aches which I had not had in 6 months. Now I know it is all from the gluten. As far as the tired thing goes...my tiredness goes directly hand in hand with how much water I drink. If I drink at least 50-60 ounces in a day I am feeling good. Anything less and I come home from work and I can sleep for like 2 hours on the couch. There are other things that I take now for the tiredness and more my general well being--probiotics, acidophilus, omega 3, and colestrum--all are helping me feel much better. If you are interested there are tons of websites on natural supplements and what you should take for certain diseases...very informative. Good luck!

tarnalberry Community Regular

I get dizzy/headachey in 15-30 minutes, and intestinal symptoms within 8 hours. Fatigue, bloating, and pain take no more than 12 hours.

RBC Newbie
I get dizzy/headachey in 15-30 minutes, and intestinal symptoms within 8 hours. Fatigue, bloating, and pain take no more than 12 hours.

Noticed your signature at the bottom...Just curious as to why you have not had and endoscopy? How can you be sure that you have Celiac? Is the difference in the diet that severe? I have positive everything and at first I barely felt better. Now I am slowly getting progressively better, but everyone always says that it is like night and day--regular diet to gluten free diet, is that how it was to you? I am just beginning to wonder if I have some other allergies/problems. Thanks.

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      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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