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

New Cd Diagnoses....need Help


lauradawn

Recommended Posts

lauradawn Explorer

Hi,

My name is Laura, and I just found out that I have Celiac through the blood test results. I am suposed to see a GI specialist. Should I look for a specialist for Celiacs?.......

Also, I am just trying to learn the secrets of the diet. I have been on it for almost a week, and am already starting to see some changes. Im a little overwhelmed right now, but just tyring to get a grip on everything. Any comments that might help would be greatly appreciated.

A couple questions that linger for me right now:

Who should I see for a Dr?

How young can a child be tested for the same disease? I am concered about my 2 year old twins.

How serious is cross contamination?


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



Celiac.com Sponsor (A8-M):



Newbie Rookie

Hey Laura!

Welcome to the board :rolleyes: . From my experience, my family doctor sent me to a GI who deals with all types of stomach problems... and she discovered the celiac. So I'm not sure if you want to go to a specialist who only deals with celiac disease... You probably won't find many who just deal with celiac disease... If the blood tests already confirmed the disease, I would expect your GI to detect damage to your instestine when he/she performs an endoscopy. In my case, my GI deals with lots of other problems as well, and she diagnosed the celiac right off the bat with much accuracy.

When you're first learning about what you can and can't have, it will feel like a lot of information... that's because it is. But you'll pick up more and more as you read. Also, these message boards are amazing. You'll find very helpful people who can give advice, and also, they're hear to simply listen when you need to vent.

Cross contamination, as basically everyone on this board will tell you, is a very important concern. When I was first diagnosed, I asked the same thing. But with time, and some accidents, I've learned that even a crumb does damage. And I'm not sure what you feel after you eat something with gluten, but even a crumb of bread makes me ill for days. Nonetheless, whether or not you feel sick, if you have celiac and eat something with gluten, damage to your instestine will occur. So don't mix utensils from jars and butter, etc. onto your gluten-free food after others have used it on their non gluten-free bread. Wipe up your counters and be on the lookout for any ways that gluten can get into your food... for example when baking non gluten-free food, watch out for flour in the air settling onto your food and your counters etc. :unsure:

I'm pretty sure that 2 year olds can get tested for celiac. You may want to double check, but from what I've read on the boards, many people test their children.

Here is a helpful link to some gluten free foods... If you need anything, please feel free to ask. We're more than happy to help! :)

Open Original Shared Link

God bless,

Newbie

Guest aramgard

Hey Laura, Welcome. About cross contamination. I usually don't eat out much, but on Wednesday, my husband took me for lunch at a place where we often eat breakfast. I had plain burger, cottage cheese and tomatoes and I got sick about 15 hours later from cross contamination of the grill, which was used for heating up buns. Believe me it is a problem. So be very careful about where you eat out and feel better with your new diet. Shirley

mannabbe Newbie

Hi Laura,

Are there any celiac support groups in your area? That's be the best way to find a really great doc, and to get the best help for your children. Most doctors, in my experience, are pretty clueless - so you'll save time and heart ache by getting a recommendation. I'm really really happy for you that you've been diagnosed! I was diagnosed when my little girl was 4 - how wonderful that you will be able to share the best years of your life with your children. My daughter is now 7 and has been gluten-free for 2 years.

Good luck,

Laurie

wclemens Newbie

Hi Laura, welcome to the board. My grandson was diagnosed by Enterolab.com at a month or so of age, after becoming violently ill when drinking cow's milk formula. This stool sample can be ordered online, returned by mail, and can also diagnose whether your child carries the gene for Celiac, is allergic to milk and dairy, along with several other options.

When you go to that website you'll see the tests they offer. Best wishes! Welda

lovegrov Collaborator

If you're going to this GI for further celiac testing you need to continue eating gluten for accurate results.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

    2. - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

    3. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,953
    • Most Online (within 30 mins)
      7,748

    ramonaja
    Newest Member
    ramonaja
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • 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.