Sick For How Long?

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i am new to this forum and to gluten intolerance. i have not yet been diagnosed with celiac disease, but i have a strong suspicion that is the problem. i had a colonoscopy about three weeks ago and the only information i was given was that i did not have chrones disease. i have a follow up apointment soon. i have been on a gluten/lactose free diet for about two months now, and for about three weeks had been symptom free. then three days ago, when i woke up (like before the g/l free diet) i was sick. then yesterday and today, the same thing.

anyway, my actual question is...

when gluten slips in to your diet, how long do you show symptoms before you get better.

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[CarlaB]

Welcome to the board!

When I get "glutened" it takes 8 days for me to feel better. Gluten is hidden everywhere, just try to make each "glutening" a learning experience so that you learn what to avoid next time!! It takes time to figure out all the hidden sources. Nini (on this board) has a beginner's kit you can download off her website that is a help for many.

Since you're already gluten-free, if they do testing, it would probably be negative even if you do have gluten intolerance. Conventional testing requires you to still be eating gluten. However, dietary response is the most accurate test of any on whether or not you have gluten intolerlance, it just can't tell you whether you have celiac disease (not that it matters since it's the same "cure"!).

The colonoscopy will not tell you whether you have celiac. They do an edoscopy and small bowel biopsy for that (they go in through the other end ).

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Thank you CarlaB for your response. that is helpful.

when i re-read my post just now, i realized that i also meant to ask...

"How long does it take once you injest gluten for a response to show up"

for me, it seems to be, like the next morning...

but in the past, i was only sick for one morning. this is the first time that it has been longer than a single morning.

i have a follow up this friday, is there anything that you guys could suggest that i could ask my doctor.

rob

[CarlaB]

Rob, mine generally shows up within a half hour, but I know it varies a lot from person to person. Many times I can tell I was glutened while still eating a meal.

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wow. what test's should i ask my doctor about, if you don't mind.

rob

[ravenwoodglass]

For me the neurological effects show up right away, a worsening of my ataxia, depression and sleep disruption. My GI symptoms begin within 24 hours with a growling tummy, gas and pain then the big D hits about 3 days after injestion. Then I have a couple of weeks of joint pain before things finally will resolve.

You should ask your doctor to run a full celiac panel, although be aware that you may see a false negative since you have been gluten-free for a while or just a low positive, ask to see the actual test results. Like with pregnacy any positive is a positive. You should also ask for tests for your levels of B12, folate, ferritin (iron) and have him also do a general blood workup with the standard tests.

[CarlaB]

wow. what test's should i ask my doctor about, if you don't mind.

rob

I was deferring that question to someone else. I was gluten-free for my testing and it all came out negative, so I went to Enterolab. I should have known for sure from dietary response, but I have kids and wanted a firm diagnosis and to know what genes I had to pass on.

I would definately ask for the celiac panel ... not just the IgA.

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thanks everyone... you guys have been great. anyone suggest anything to control symptoms until the eight or so days is up.

rob

[CarlaB]

thanks everyone... you guys have been great. anyone suggest anything to control symptoms until the eight or so days is up.

rob

Just be sure to stay hydrated ... there's not much you can do but wait it out.

[sparky]

i am new to this forum and to gluten intolerance. i have not yet been diagnosed with celiac disease, but i have a strong suspicion that is the problem. i had a colonoscopy about three weeks ago and the only information i was given was that i did not have chrones disease. i have a follow up apointment soon. i have been on a gluten/lactose free diet for about two months now, and for about three weeks had been symptom free. then three days ago, when i woke up (like before the g/l free diet) i was sick. then yesterday and today, the same thing.

anyway, my actual question is...

when gluten slips in to your diet, how long do you show symptoms before you get better.

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RECOVERY TIME: I just wanted to help everybody out here. I've been gluten free for 9 months. It took me about 6 months to get more significant/more noticeable results. Still, I have to watch my diet. I can't eat fatty food. Everybody, please go check out MayoClinic.com and search for celiac disease. I also worked at Mayo Clinic Hospital for a little while. My understanding is that the villi can take anywhere from 6 months-2 yrs to heal or grow. Then 2yrs to 5yrs for close to 100% recovery. The reason for the such the large range of time has to due with age/severity. These villi, in the small intestine, are responsible for absortion and production of enyzmes to break fats/proteins in food. So, as you can see, they are very important. People experiencing Dermatitis Hepataformis (DH), can expect to wait up to 2 yrs to clear up. Me, I've had skin problems, diahrrea, lupus like symptoms, and etc. I've also lived 15 yrs. not knowing what the heck what going on. I'm 30 yrs old now. From age 26-29 my symptoms got really bad. All the CELIACS out there who are just diagnosed. HAVE HOPE. It will get better. There is a 95% chance you will recover in time. I think the other 5% who don't are either still eating gluten or the villi are dead. These are good odds. If you are younger (new born-50). Odds of recovery are almost 100% One final note for complications of recovery. Ya, you probably heard that we celiacs become lactose intolerant. This is due to the tips of the villi, where lactate (enzyme that breaks down lactose in dairy) is produced, being damaged. My final piece of advise for those who aren't recovering. Make sure you are not cross reacting with SOY or MILK. Guess what? These two have very similar protein structures to gluten. This may make the immune system react and destroy your villi. That's right, gluten isn't the only substance that can trigger a villi attack.

[happygirl]

Response times vary....mine come very sudddenly (within the meal, usually, and develop over the next few hours)....others take a few hours...others come a day or so later.

Hope you are feeling better!

Dr. Fassano (a leading researcher at the U of Maryland, Baltimore) says that you should have tested:

There is a particular series of blood tests called the ‘Celiac Panel”. These tests measure your immune system’s response to gluten in the food you eat.

tTG-IgA or tissue transglutaminase-IgA

AGA-IgG or Antigliadin IgG

AGA-IgA or Antigliadin IGA

Total IGA

Check out this thread that I just responded to about testing:

www.glutenfreeforum/index.php?showtopic=24451

Hope this helps-let us know what we can do.