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Usually How Long

Mayster

By Mayster
in Coping with Celiac Disease

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Mayster Newbie
Mayster
Posted
:( How long were you guys gluten free before feeling better? I've been reading that once folks have gone gluten free they've never felt better and I wonder how long after that was.
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linds Apprentice
linds
Posted

I'm not sure what other people will have to say but I have been gluten free for a month and feel a little bit better but I still don't have a whole day that I feel good. It seems that still everytime I eat no matter what it is i still have an upset stomach. I have heard some people say that it happens right away while it takes others months. Hope that helps.

Budew Rookie
Budew
Posted

Some folks feel better right away. Some find that they have other problems too.

I waited 2 years before I looked into related problems.

It took me 7 years to find a good doctor.

I thought I'd never be better. Wrong.

Everyday in every way things are getting better.

My mom has had celiac 50 years. Very few problems.

I think it depends on the damage eating gluten has done to your system before the diagnosis, and how careful a person is about food, cross contamination, and even shampoo lotions can cause continued problems.

How long have you been gluten-free now?

Aren't you feeling better?

If not, what's wrong? We may have suggestions?

If you both are not feeling better soon. Let us help.

Rest assured you can be just fine. : )

jerseyangel Proficient
jerseyangel
Posted

It took me 3-4 months to really "turn the corner". I was pretty sick--and had been for years. In addition to the D and nausea, I had severe anemia, tingling and numbness in my legs, feet and face, hair loss, weight loss, bruises on my arms, fatigue, depression, anxiety and brain fog.

I felt very tired for the first few weeks, then gradually began to feel better. It is different for everyone, as are the symptoms that we have.

The main thing is to stick with the gluten-free diet 100%, get as much rest as possible, drink lots of good water and be patient--it will get better :)

Mayster Newbie
Mayster
Posted
  • Author

I have been gluten free a month and this past week I have gone from wicked insomnia to barely staying awake. I'm on a lot of meds too though. My stomach hurts constantly. The docs tell me until my gut heals, I will have discomfort eating. Sip and nibble is what they say. When it gets real bad they say go back to liquids for a couple of days. Bipsy showed no villi left so until they grow back I am told to expect discomfort when I eat. They have given me Bentyl for spasms and Phenergan for the queasy feeling, but all in all it's still unpleasant to eat.

How long have you been gluten-free now?

Aren't you feeling better?

If not, what's wrong? We may have suggestions?

If you both are not feeling better soon. Let us help.

Rest assured you can be just fine. : )

Gamecreature Rookie
Gamecreature
Posted

Everybody's different. I've been gluten-free for about 6 weeks and while I've noticed immediate improvement in the way I've generally felt, I've had several flare-ups, some of which felt worse than I did before going gluten-free. Your age is a factor in how long it takes you to heal. The older you are, the longer it takes.

hez Enthusiast
hez
Posted

It took me about 6 months before I noticed the diet helping. Then by nine months I really felt great. I think it just took my body a while to heal (my vili were completely flat). Give your self some time, know that you will make mistakes and keep with the diet.

Hez

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dionnek Enthusiast
dionnek
Posted

I've been gluten-free 6 months now and haven't noticed much of a difference, although like others my villi were completely flat (I had been sick for many years before my 10th dr. discovered celiac!). I did notice today that I haven't had as many bruises on my legs these last few weeks (have always had huge unexplained bruises in the past), and my dizzy spells are less and less and my leg/foot cramps have just about gone away completely, so even though I haven't had any improvements in the intestinal issues, other things seem to be improving :)

Hang in there - I've heard it can take a year or more to notice improvements (that's what I'm shooting for).

LynRyn Newbie
LynRyn
Posted

I got Celiac about a month ago, and was diagnosed\on a gluten-free diet 2 weeks later. I started feeling normal again about a week after going gluten-free. I'm 17, so that probably helped a bit. Not that I was eating gluten while on celiac for very long.

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    • knitty kitty
      ttg iga high (646 mg/dl) other results are normal

      By knitty kitty · Posted

      @kpf, Were you eating ten grams or more of gluten daily in the month preceding your antibody blood tests? TTg IgA antibodies are made in the intestines.  Ten grams of gluten per day for several weeks before testing is required to provoke sufficient antibody production for the antibodies to leave the intestines and enter the blood stream and be measured in blood tests. If you had already gone gluten free or if you had lowered your consumption of gluten before testing, your results will be inaccurate and inconclusive.   See link below on gluten challenge guidelines. Have you had any genetic testing done to see if you carry genes for Celiac disease?  If you don't have genes for Celiac, look elsewhere for a diagnosis.  But if you have Celiac genes, you cannot rule out Celiac disease. You mentioned in another post that you are vegetarian.  Have you been checked for nutritional deficiencies?  The best sources of the eight essential B vitamins are found in meats.  Do you supplement any of the B vitamins as a vegetarian? Deficiency in Thiamine Vitamin B 1 is strongly associated with anemia which can cause false negatives on antibody tests.  Fatigue, numbness or tingling in extremities, difficulty with coordination, headaches and anemia are strongly associated with thiamine deficiency.  Other B vitamins that contribute to those symptoms are Riboflavin B 2, Pyridoxine B 6, Folate B 9 and B12 Cobalamine.  The eight B vitamins all work together with minerals like magnesium and iron.  So your symptoms are indicative of B vitamin deficiencies.  You can develop vitamin and mineral deficiencies just being a vegetarian and not eating good sources of B vitamins like meat.  B vitamin deficiencies are found in Celiac due to the malabsorption of nutrients because the lining of the intestines gets damaged by the antibodies produced in response to gluten.    
    • Trish G
      Fiber Supplement

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    • Wheatwacked
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      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Wheatwacked · Posted

      My TMJ ended when I lost a middle lower molar.  I had an amalgam filling from youth (1960s) that failed and the tooth broke.  I had what was left pulled and did not bother to replace it.  My bite shifted and the TMJ went away.  I just had to be careful eating M&M Peanuts because they would get stuck in the hole.
    • trents
      ttg iga high (646 mg/dl) other results are normal

      By trents · Posted

      Yes, I wondered about the units as well. That large number sure looked more like what we're used to seeing in connection with total IGA scores rather than TTG-IGA. The total IGA test is given to determine if you are IGA deficient. In the case of IGA deficiency, other IGA tests will b skewed and their scores cannot be trusted. Elevated total IGA can point to other health issues, some of them potentially serious, or it can mean nothing. But it doesn't look like you have celiac disease.
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