• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

New To Me!
0

14 posts in this topic

I am a 21 year old college student near philly....I have been sick on and off since I was nine and I have been basically incapacitated for about a year before my college physician finally suggested celiac disease....my blood tests all came back high positives (all around 70-80 (IGG IGA and TTG))....I've been on the diet for about 4 weeks and it's going great, I get sick occasionally when I screw up but I'm getting better! Well....I'd love to talk to anyone about this stuff....anytime....Just sayin hi to all!!

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Welcome to the board XoHeatherxO

This is a great place for support and information. I am sorry to hear that you have been so sick for such a long time but glad you got a proper dx and are feeling better on the gluten-free diet!

Here are some helpful links since you are just beginning the gluten-free diet:

Safe & Forbidden Food & Ingredient Lists for Gluten-Free Diets

Gluten Free Drugs

0

Share this post


Link to post
Share on other sites

Hi Heather,

Welcome from another newbie!

I've only been trying gluten-free for almost 2 weeks, and still making big mistakes! I think you'll find help on this board, more than anywhere!

I have another thing I want to ask, if anyone can help! I was going to try giving up dairy, also. I have some, but not all. Yesterday I had cheese. It didn't hurt my stomach, but today I felt tired and lethargic. And I had been feeling better the days I ate gluten-free and dairy free. I don't think it was because the cheese wasn't gluten-free, but was it maybe becasue it's harder to digest, so made me so tired? This is still so confusing to me!

0

Share this post


Link to post
Share on other sites

I'd also like to welcome Heather. And sorry about your mishap Nita. Hope you get over it fast. One thing I've noticed since being gluten-free (with some slip ups) is that my bowels are changing. Fot the better hopefully. I'm still waiting for the results from enterolab. Yesterday I went to my allergist 3 hours a way. I started with him at the beginning of the year before I fell and broke my foot and couldn't get to him. This was at the recommendation (pushing) of a friend who goes to him. He keeps telling me that my immune system is screwed up and overreacting to everything on account of my being so sick growing up. Well, I told him about my checking out celiac disease and he knew about it and turns out he orders blood testing for it. Better testing than what my doctor ordered. TTG and whatever else. It was a complete panel and he asked me if I'd like him to order it for me. Of course I said if my insurance was paying for it lets go for it. So I had blood drawn yesterday for a FULL panel. Will know the results in about 10 days. He said he'd call me. I'm also going to be trying anti viral medication for a month (if you knew my health history you'd understand) which is safe according to him. And I'll be starting shots in about a week (allergy shots). Hugs, Carol B

P.S. It turns out that when I had skin testing on my back for allergies they also included eggs, wheat and dairy. those were all negative. Of course, that only works for severe problems like anaphylactic shock. But still it was interesing.

0

Share this post


Link to post
Share on other sites

I also wanted to mention that since I've been gluten-free I've lost another 5 lbs. I lost 40 lbs since being on Armour thyroid since last August. This is fine as I'm only 5'1" and had gotten up to 160. But now I'm just hoping it doesn't continue and I'm assuming the additional 5 has to do with being gluten-free. Maybe toxins leaving the body? My family says I look great but I just want to make sure I don't keep losing. That wouldn't be good. Hugs, Carol B

0

Share this post


Link to post
Share on other sites
Ads by Google:


Carol B, FYI, after I stopped eating gluten, I was able to stop taking all my allergy meds, too...I had environmental allergies something awful, all my life, and they are managed now with an occasional spritz of decongestant. I don't know how or if this applies to any other allergies but it was an unexpected and very welcome bonus for me--hooray for the gluten-free lifestyle!

0

Share this post


Link to post
Share on other sites

Thanks Dana. It will be interesting to see what all happens. I'm really interested in what to do with my thyroid medication which has done VERY LITTLE for me. Among the top 20 diagnosis before a diagnosis of celiac disease listed by the Mayo Clinic, I have 5 of them. Hugs, Carol B

0

Share this post


Link to post
Share on other sites




Wow Carol!

You seem to have many things that can be related to celiac disease! I'll be interested to hear your blood and enterolab results! Good luck! :)

I saw my reg. Dr. today for the first time since my tests by the GI. I wondered what she'd think about going gluten-free, with the neg. blood work and probable biopsy. She was surprised the blood test was neg., but was happy to help me with the celiac disease. It turns out a Dr. in that office has celiac disease, so they're responsive to it there! And they will get some literature from her for me, and a Dietician who is good with celiac disease. Yaaaay!!! I had such doubts, and it is turning out well, for help for me!

I acutally had a trainee "Dr. to be" first, then my reg. Dr. So, I got help from 2 persons! The trainee seemed well versed on celiac disease, surprisingly. She said that dairy won't further damage my lesions, but to avoid them for awhile, as they are hard to digest, and cause distress. Glad to know that when I fudge with dairy, it isn't a permanent thing! I can put up with the sluggishness occasionally, when I'm not careful.

Nita

0

Share this post


Link to post
Share on other sites

Hi Nita. Sounds like things are going positive for you. That's WONDERFUL. My health history goes back to birth and when my mother gave up trying to find answers for me I took over the job. That was when I left home at 18. 20 years ago when we moved and I AGAIN got worse I gave up on doctors (but not on prayer) and took matters into my own hands. I have read and tried so many different things. I currently have a formal diagnosis of chronic fatigue, fibromyalgia, low thyroid, sinus/allergies, and IBS. My father had chron's but now that I'm learning about this I wonder if he had it as well. To late to find out for him. Anyways, keep up the good work. Hugs, Carol B

0

Share this post


Link to post
Share on other sites

Hi Carol,

Thank you! I am doing very well. I think I don't have a lot of symptoms, so other than damaging my duodenum, I'm not that sick. If job changes hadn't stressed me out, and tiggered the bad pains, I would still be treating IBS! Actually, the Dr. said I was very healthy! (Lucky me, as a celiac!) And, I'm so glad to know how to get healthier gut-wise, and avoid those bad pains.

I had an older brother die of colon cancer, and wonder now if he had celiac disease and was asymptomatic, and never knew. Makes me want to try hard to heal inside, and avoid that! May be the same with your Dad, and Chrohns.

I wonder if some of your problems will diminish, when you are totally gluten-free? I hope so, and that you'll feel better.

It's amazing to me, how much less fatigued and depressed I feel now. And it's only been 2 weeks! I never knew depression, even as mild as mine was, could be related to food! What an odd disease!

Take care, and keep us posted with your test results!

Nita

0

Share this post


Link to post
Share on other sites




Hi Nita. I also had a grandfather with colon cancer. All very interesting. I still don't have the energy level of a normal person and it's been 3 weeks. My main doctor told me the other day that he's had kids whose symptoms disappeared drastically in a few weeks. then he had a women in her 50's who took 5-6 months to see improvements. I'm also on antivirals starting this week thank's to the suggestion of my allergist. I think they may be helping a little but we'll see. It's only been a few days. I start allergy shots next week. Only time will tell and I have no choice but to wait. LOL Hugs, Carol B

0

Share this post


Link to post
Share on other sites

Hi Carol,

With your allergies and such, it may take you longer to feel noticeably better. I'm hoping sooner, however!

When I eat dairy or something else a bit harder to digest, I feel more sluggish. But, if that's the worst I feel, I'll count myself lucky. But, I'm wondering if I don't have strong symptoms, how I'll know if I'm not getting traces, and therefore not healing as well. My Dr. said if after my next appt. in 60 days, I feel good, I won't need another endoscopy for years. How will I know I'm healing inside???? It seems others on this board have another scope in 6 months or a year. Hmmmm!

Anyone have an answer to this? Or, just wait and see?

Best of luck, Carol! Feel well soon!

Nita

0

Share this post


Link to post
Share on other sites

Hi Nita. I can tell you that Enterolabs recommends getting testing once a year to see how you are doing. Probably wouldn't need the full panel like I'm getting. Just a thought. Hugs, Carol B (who wishes the weather would settle down and quit changing. That really causes problems for me)

0

Share this post


Link to post
Share on other sites

Hi Heather, I'm mom to an 18 yr old daughter dx'd in Feb 04. We are from the Philly area and she will be attending Gwynedd-Mercy college in Bluebell. They have made her go through the ADA channels and are making some special exceptions for her diet. Just want to make sure that you know your school should be able to help you out by ordering gluten-free foods or by giving you cooking access if you are on campus. She still has bad days and is presently on senior week in OC/NJ starving:( Check out the Dietary Shoppe in East Falls. It is the best around for gluten-free foods. My daughter doesn't like the message boards and such. Her GI said it could take two years to heal completely and she has had setbacks with acid reflux. Keep with it, good luck, you are not alone.

Kathy

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,378
    • Total Posts
      935,771
  • Member Statistics

    • Total Members
      65,070
    • Most Online
      3,093

    Newest Member
    Catseyez
    Joined
  • Popular Now

  • Topics

  • Posts

    • Just thought of something else.  Have you tried cream of rice cereal?   When I was at my worst, I'd have this a few times a day to settle my stomach. 
    • The full celiac panel includes: TTG IGA TTG IGG DGP IGA DGP IGG EMA IGA   You can either have a gastroenterologist order the full celiac panel plus whatever else they typically test for, or you can order your own test at a site like walkinlab.com. At walkinlab.com it's called the celiac comprehensive test and costs $298.00 (not covered by insurance). Then if any one test comes up high you can give it to your gastroenterologist so they can do an endoscopy. The blood draw is done at your nearest Labcorp. Personally I'd make an appointment at the gastro so they can order their other blood tests and just insist on the full celiac panel also. There's any number of things it could be, not just celiac. If you don't get diagnosed you probably won't stick with a 100 percent gluten free diet for the many months required to see if it works. Good luck in your search.
    • You could certainly try.  Just remember that, if the mix doesn't have xanthum gum, you may need a little.  
    • Maybe the 20 mg. was too strong for you and increasing symptoms?   I have a very low threshold for most meds, and do better on child sized doses.   If you tolerate the 10 mg., that may be the way to go just to get symptoms under control and get stabilized.  Or maybe 10 mg. every other day, if that works. I read that food intolerance symptoms can take 24 to 48 hours to show up.   Can you think of what you were eating in the week before all this started?   I have always used dairy to settle my stomach, so until I figured out the dairy intolerance I was using a small glass of warm milk whenever my stomach was upset.   It provided immediate relief, but caught up with me hours later.   It was kind of hard to believe that milk was the cause when it was so effective in immediate symptom management.    I had also increased chocolate, coffee, and peanut butter right around the same time.  They don't seem to be intolerances (or maybe they are in huge quantities!), but they were irritants, so I needed to avoid them to get things to settle down.  Now that I'm approaching the 3 month point and starting to do better, I have been able to drink coffee with soy milk to buffer, have a little chocolate, and sample some peanuts without much distress.  Perhaps the hardest part of all of this is the time it takes (why forever?!), and how limited one's diet must be for so long in order to stabilize.  I was so sick of eating the same thing for so many weeks, that I started dreading the next meal.  I agree that symptoms and recovery become a blur.  I started making notes on a calendar so I could be more objective and accurate in looking back to assess my symptoms, what I'd tried, and progress.  Otherwise, I just couldn't tell what really did and didn't work.   What seemed like a week ago was really 2 or 3 ... I know you know what I mean! Do follow up with your doctor as need be.  I find that GI docs aren't that helpful for this sort of thing as it's minor in the general scheme of GI things.  My PCP basically told me it was trial and error, as it's different for each one of us.  He could only guide me in meds.   
    • I am sorry that you are all having to go through this. I know all too well the neuro issues she is going through. The world seems so hopeless under that gluten cloud. But it does lift.  There isn't much a neurologist is going to be able to do except to encourage her to be as strict as possible.  It would be a good idea to have your GP or GI do a vitamin and mineral panel if that hasn't already been done. We do sometimes need supplementation while healing as some nutrients do have an impact on the nervous system function. What I find helps me the most is knowing that it is the gluten and it will pass. It is a horrible feeling when it is happening and is hard on ones loved ones.  All you really can do to help her is to remind her that it is the gluten that is making her feel so bad. Try to provide distractions and understanding. If you haven't already do read the Newbie 101 thread at the top of the Coping section it has a lot of good info for you.  These episodes will come less often as accidental glutenings become less frequent. Ask any questions you need and feel free to vent on the tough days.
  • Upcoming Events