Jump to content

  • 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

Sooo, How Long Did It Take You?

Johnny Cool

By Johnny Cool
in Coping with Celiac Disease

Recommended Posts

Johnny Cool Rookie
Johnny Cool
Posted

Being as I'm new to this disease, I've been on the no gluten diet for a month now and feel the same as before <_< . The wierd thing for me is, besides the "foggyness" and being dizzy and light headed is, my face and mostly my lips are numb most of the time. Has anyone had that?

I also need a sleeping pill each night, or I don't sleep very long.

So how long have you been on the diet before you started feeling "normal" again??

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
Being as I'm new to this disease, I've been on the no gluten diet for a month now and feel the same as before <_< . The wierd thing for me is, besides the "foggyness" and being dizzy and light headed is, my face and mostly my lips are numb most of the time. Has anyone had that?

I also need a sleeping pill each night, or I don't sleep very long.

So how long have you been on the diet before you started feeling "normal" again??

Hey Mr. Cool:

Welcome to this site. You will find some great information here.

No...It seems to me that something is going on because you should be feeling some improvement after a months time.

Do you have a dedicated toaster, cutting boards, new wooded spoons and check your scratched pots and pans. Gluten can hide everywhere. Have you check your toiletries and medicines or vitamins? Every thing that gets near or in your mouth is suspect for gluten. I have found that it is nearly impossible to be 100% gluten free in the beginning. The learning curve is way too steep. With time and a crash course, you can achieve 100% (or darn close).

It is also recommended that newbies to the diet eliminate dairy for a time until healing can begin. Then you can re-introduce it.

I hope you begin feeling better soon.

rumbles Newbie
rumbles
Posted
Being as I'm new to this disease, I've been on the no gluten diet for a month now and feel the same as before <_< . The wierd thing for me is, besides the "foggyness" and being dizzy and light headed is, my face and mostly my lips are numb most of the time. Has anyone had that?

I also need a sleeping pill each night, or I don't sleep very long.

So how long have you been on the diet before you started feeling "normal" again??

Hi, Johnny Cool,

I didn't have foggyness, dizziness, light headed or numbness when going gluten free, but did

have problems sleeping for more than a few hours in the beginning, - that lasted a couple of

months.

If you haven't already, you might want to verify with the manufacturer that the sleeping pills

are gluten free. Unfortunately, medications (prescription, over-the-counter and herbals) are not

required to disclose fillers in their ingredients, - it's not unusual for the filler to contain gluten.

If it's over-the-counter, the manufacturer's web site may list whether or not the product has

gluten in it, - otherwise you'd need to either call them or email them; if it's prescription, ask

your pharmacist to verify with the manufacturer whether or not it contains gluten.

Pat

Guest j_mommy
Guest j_mommy
Posted

I would have to agree with the other posters...you should be seeing some imporvment after a month...something atleast.

Definetly check meds, toothpastes, the things momma goose mentioned. Also are you in a gluten-free house or do you share the kitchen with gluten eaters????

Cath4k Apprentice
Cath4k
Posted

Are you eating many foods with food additives like artificial colorings, artificial flavorings, BHT, BHA, TBHQ, aspartame, MSG, etc? These chemicals are very bad for everyone, but they are especially bad for people with damaged intestines/immune systems. All of us in my family react to these chemicals, but two of my dc REALLY react. It was actually what we eliminated first before we figured out the gluten connection. After my 16 yo dd had been gluten free for awhile, she had to take a medication that had yellow dye in it. About 6 days into the med, she was up all night because she couldn't sleep. These chemicals wreak havoc on my dc and sleeplessness is high on that list. Be aware that even if you read labels, these are often hidden in processed foods (the packaging is sprayed or they don't have to list ingredients within other ingredients - like TBHQ within the oil used.)

It is highly likely that your sleep med has some of these chemicals.

It could also be a B12 deficiency.

Although you need to figure out what is CAUSING the problem, you may want to soak with Epsom Salts every night before bed. The sulfates will help your body detoxify and the magnesium is good for you and will help you relax. You can soak in a tub or just do a warm foot soak.

I hope you figure it out.

Disclaimer: we are still pretty new to gluten free (3 1/2 mths), but we have learned a lot very quickly and there are six of us I am learning from! :) We have been chemical free for 2 1/2 years (mostly so for most of that time when I thought reading labels was enough and strictly so when I learned about hidden ingredients.)

Cathy

Johnny Cool Rookie
Johnny Cool
Posted
  • Author

Thanks, good info evrybody :) I'll check these out. One question tho, what does cutting dairy out do? as it's non-gluten and my Dr. did a bone scan and said I was borderline osteoporosis and put me on calcium and vitamin D, I'm thinking the more calcium I get the better. Being from Wisconsin I eat a lot of cheese and drink gallons of milk... I don't own a cheese head tho :-)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities. Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement. 130 times the safe upper limit. 130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms...
    2. trents
      - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative...
    3. JudyLou
      - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankle...
    4. marzian
      - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

      This is very exciting news. The research lends itself to preventing the immune system in other autoimmune disorders from getting out of sorts. As someone with a compendium of autoimmune disorders I feel a bit of hope.
    5. Jmartes71
      - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week, in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,144
    • Most Online (within 30 mins)
      7,748
    Marsu
    Newest Member
    Marsu
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • trents
      Seeking advice on potential gluten challenge

      By trents · Posted

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Medications

      By Jmartes71 · Posted

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.