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

Recently Diagnoised With celiac disease


Joe

Recommended Posts

Joe Newbie

I have been on the" gluten free diet' for two weeks and signs of recovery has started. I saw a dietitian today and she was amazed at the knowledge I had in such a short time. Thanks to this website and several others I have visited I can now relate to others who are further down the road than I am.

I have tried making my own bread using the approved flower mixtures and lists of approved ingredients. It tastes awful and I" toasted it" to hide the taste. Am I doing something wrong or is this the best it gets?

What is the average time for the skin blisters and rashes I have to disapear quietly into the night! My scalp is a battlefield and I have been using a medicated shampoo for the last two weeks with no change. I need some help to locate the best product available to win then war and return my scalp to normal!!

I am brand new at this and hope my questions make some since and that I get some helpful advice soon!

This site has a lot to offer celiacs who need to learn what it takes to get healthy and stay that way! I am a 60 year old male who's body is not willing to give up the fight!! Go Irish!

jkelly2315


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



Celiac.com Sponsor (A8-M):



teebs in WV Apprentice

Hi Joe. Glad you are starting to feel better. There is a prescription - Dapsone - that has definitely helped me, as well as many others. However, there are side-effects and you need to have your bloodwork monitored while you are taking it. I have been taking it since October and my breakouts started clearing up after just a couple of days. This, in conjunction with a gluten-free diet should make you feel soooooooooo much better!

There are also other medications available, but I have not tried them. Without medication, it can take up to 6 months to completely clear (from what I have read, and I am by no means an expert). Others on here will chime in and give you some good advice.

As far as the bread goes, I haven't found any that I think are good. I tried another one this weekend - one that I have seen several people rave about - and I didn't like it. I would rather go without than eat that stuff! But, I hear that you do get used to it - I'm just not there yet.

Good luck to you - and welcome!

mamaw Community Regular

Hello

Stick to it and as time goes on you will begin to feel better & better......

I love the bread mix from breads by anna. It's not towntalk white but an earthy bread. I make it in a bread maker....Also Glutino makes good bagels, Everybody Eats in Brooklyn has the most wonderful crusty rolls and baguettes in the world but pricey. I have to mailorder almost everything as thee is not much where I live in western Pa.....I use betty hagman four bean flour when making cookies and sweet breads with no changes to my old wheat recipes...

I have been researching by trial & error and have spent alot of money doing it but I now know where to buy the best food stuff at there....

Its a shame the US is so far behind other countries on this issue........ We have four of us eating gluten-free - 2 are under 7 yrs old so I try to keep their interest peaked with new goodies.

mamaw

lhasapets@zoominternet.net

nettiebeads Apprentice

Be sure to check all of your toiletries for gluten. A lot of the lotions that promote soothing have oat in them. Quite a few have wheat, wheat germ or wheat starch. Did you get yourself a dedicated toaster? I now have one, a Christmas present from my MIL. And check ALL labels. Since the new labeling law went into effect I'm finding that lots of things I thought were safe are "made in a facility that also processes wheat" :angry::angry::angry:

Give yourself time. It takes awhile for the damage to occur, so likewise it takes time to heal. And since everyone's physiology is different, everyone has different healing rates. Just keep at it.

Annette

Joe Newbie

Be sure to check all of your toiletries for gluten. A lot of the lotions that promote soothing have oat in them. Quite a few have wheat, wheat germ or wheat starch. Did you get yourself a dedicated toaster? I now have one, a Christmas present from my MIL. And check ALL labels. Since the new labeling law went into effect I'm finding that lots of things I thought were safe are "made in a facility that also processes wheat" :angry::angry::angry:

Give yourself time.

I want to thank you for your reply to my questions and concerns. Everyday is a new adventure for me as I wair for new dvelopments with this disease. I am dizzy, somewhat confused and my strength is not what it should be. I know in time with this medication I will eventually turn the corner but it's the wait time that is frustrating me.

I have open mind and willing to stay on the gluten free diet becuase once this disease is under control I do not want to go backwards! My family is suupporting me and will do whatever it takrs tom make me feel better about my condition.

I go for my third blood test tomorrow and hopefully I will be improving. My Dr. diagnoised the disease right away and got me started on the road to recovery. I have confidence in him but will get a second opinion and new testing next month just as a backup! If I am to be on this diet for life I want all test data to be confirmed by two different Drs. and labs. I will feel better knowing this!

Live long and prosper!

Joe

Archived

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

  • 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. - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    2. - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

    3. - 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)

    4. - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

    5. - Scott Adams replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Blood Test for Celiac wheat type matters?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,139
    • Most Online (within 30 mins)
      7,748

    kathleen apodaca
    Newest Member
    kathleen apodaca
    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)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      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
      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
      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
      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.
    • Jmartes71
      I also noticed I get debilitating migraines when I smell gluten, wheat and its not taken seriously when it affects one in every way.Im still begging to properly be heard.I also noticed tolerance level is down the drain with age and life changes. I have been told by incompetent medical that im not celiac or that sensitive. Diagnosed in 1994 by gi biopsy gluten-free ever since along with other lovely food allergies. Prayers
×
×
  • 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.