Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Recently Diagnosed But No Reaction To Eating Gluten
0

11 posts in this topic

Hey everyone,

I'm an 18 year old male that was diagnosed with celiac disease two weeks ago. I'm a pretty active and outgoing person and I have no symptoms of celiac disease whatsoever. Except, I have been iron deficient for the last few years which led to an endoscopy (my diet is pretty healthy and balanced) and thus i was diagnosed with celiac disease.

Now, I've been eating gluten free for about 2 weeks now and i don't feel one bit different. My question is, how do i know if I'm doing this right? I've cut out all the gluten free foods but please note i still use the same utensils as my family (none of them eat gluten free). I just rinse them with hand prior to using even they have been already washed. Is this good enough to heal my intestines?

Again, I dont react at all to gluten but intestines's lining is flattened so I obviously have celiac disease.

0

Share this post


Link to post
Share on other sites


Ads by Google:

It is very common in the beginning to have no noticeable reaction to eating gluten. It is also common to begin reacting violently to it once you have been gluten-free for a few months. Until then, you just need to be very vigilant. Utensils should be fine as long as they are thoroughly washed. You need your own toaster, cutting board and colander. Plastic storage containers and utensils can hold gluten, so you should use new ones. Scratched teflon or enamel pans will also contaminate you- stainless steel is fine as long as it is washed thoroughly.

It isn't about just getting sick. You need to shut down the immune response to gluten, and as long as your body is exposed to even tiny ammounts, it will continue making antibodies, even if you don't feel sick.

Check out the newbie 101 topic for more detailed info on what changes to make.

And welcome to the boards!

0

Share this post


Link to post
Share on other sites

I don't know... I could be enough. It's a hard call when you have silent celiac to ensure you are contaminating your food. If you are sure that your vitamins, medications, sauces (soy, wochestershire, teriyaki, barbque) crackers and cereals are all gluten-free then you are probably doing enough.

I would check your iron levels and celiac blood panels in a few months to see if it's improving at all.

When I went gluten-free, my improvements were GI in nature as well as less frequent migraines. My energy didn't change a bit. I found out I was hypothyroid and that was holding my energy back. If low energy is an issue, and everything else is fine, you might want to have your TSH levels checked; Hashimoto's hypothyroidism occurs frequently along with celiac.

Best wishes.

0

Share this post


Link to post
Share on other sites

It is very common in the beginning to have no noticeable reaction to eating gluten. It is also common to begin reacting violently to it once you have been gluten-free for a few months. Until then, you just need to be very vigilant. Utensils should be fine as long as they are thoroughly washed. You need your own toaster, cutting board and colander. Plastic storage containers and utensils can hold gluten, so you should use new ones. Scratched teflon or enamel pans will also contaminate you- stainless steel is fine as long as it is washed thoroughly.

It isn't about just getting sick. You need to shut down the immune response to gluten, and as long as your body is exposed to even tiny ammounts, it will continue making antibodies, even if you don't feel sick.

Check out the newbie 101 topic for more detailed info on what changes to make.

And welcome to the boards!

Wow that's a really good answer. Just what i was looking for! So I'll get my mum to get a new pan and cutting board for gluten free cooking. My parents are adamant that contamination of small particles of gluten won't do any harm (then again, they were adamant to not get a endoscopy too, and thought i was just fine). I have skimmed the 101 topic, sounds like a great read. Will read it thoroughly later today. But again, thanks a lot for that answer, really cleared up a lot of my doubts.

I don't know... I could be enough. It's a hard call when you have silent celiac to ensure you are contaminating your food. If you are sure that your vitamins, medications, sauces (soy, wochestershire, teriyaki, barbque) crackers and cereals are all gluten-free then you are probably doing enough.

I would check your iron levels and celiac blood panels in a few months to see if it's improving at all.

When I went gluten-free, my improvements were GI in nature as well as less frequent migraines. My energy didn't change a bit. I found out I was hypothyroid and that was holding my energy back. If low energy is an issue, and everything else is fine, you might want to have your TSH levels checked; Hashimoto's hypothyroidism occurs frequently along with celiac.

Best wishes.

Thanks for the answer. Yeah I strictly make sure everything i eat is gluten free.

On more question: As stated before, my iron and B12 levels are pretty darn low (cant remember the numbers right now). It's really bugging me because iron supplements cant help (as my intestines cant absorb any iron). Any rough estimate on how long would it be before i start to absorb iron properly?

0

Share this post


Link to post
Share on other sites

I had the exact same situation as you - no symptoms, could eat a bowl of pasta and not feel a thing. But I battled iron deficiency for years! After being gluten free for several months, NOW I have reactions to gluten. Most people seem to become more sensitive and have more reactions after being gluten free for a bit. My guess is that as the months go on you will definitely know if you've eaten or been exposed to it.

As other people said, get your lab work done again in 6 months and see if there are any changes. As long as you check all your labels, the antibodies should go down! And welcome to the forum! Ask lots of questions!!

0

Share this post


Link to post
Share on other sites




I have had the same experience. What led me to being diagnosed was osteoporosis. I was shocked when I tested positive since I have never felt ill by eating gluten. It makes me a bit nervous - I feel that I am a very poor "barometer" - never knowing if I am accidentally eating gluten. I have just reached my 4 week mark. I am anxious to be tested again after 6 months to see if there has been any improvement. It's very difficult to know if I am truly gluten free.

0

Share this post


Link to post
Share on other sites

Tell your parents that celiac disease is an immune system response and remind them that the smallest of organisms, virii, are enough to make your immune system activate. A few virii in your body are miniscule compared to the amount of gluten in a crumb of bread. Also tell them that your doctor told you to avoid even the tiniest amount of gluten; even if they didn't, my GI did. Told me to have a new toaster, wash all the dishcloths and towels in hot water only, only use clean utensils cloths etc for any of my food, and don't take chances with a food I'm unsure about.

Also it's unclear to me if I get an sort of immediate gluten response yet. Initially I thought I didn't, but I'm not sure anymore. Although unlike you, I didn't feel very good prior to the dx.

0

Share this post


Link to post
Share on other sites

Your parents need to be educated. It isn't even just about celiac. If the auto-immune response is allowed to continue, you are likely to develop additional auto immune diseases, which they may understand are serious. Rheumatoid Arthritis, Lupus, Type 1 Diabetes, Multiple Sclerosis, Sjorens, Hashimotos, just to name a few. Auto immune diseases tend to cluster, and being celiac already raises your risk. It is important to doeverything you can to avoid that happening, even if you don't feel sick.

I recommend you print some info off the internet- your dr may not be a lot of help as many are kind of clueless about celiac. Celiac.com has great articles.

As for absorption- no one can tell you as everyone heals differently. But within 6 mos you will hopefully be significantly healed enough to be absorbing more. For some people it can take years. B12 can and should be taken sublingually- it absorbs better thru mucous membranes. You can get sublingual tablets at any drugstore. Same with Vit D which you didn't mention but tends to be low in the general population, even those without celiacs!

0

Share this post


Link to post
Share on other sites

Welcome to the forum, Panda.

I think you've probably caught your Celiac in very early stages, so that's really lucky! I had very low iron in my late teens, and looking back it was probably the first sign of the disease popping up. Probably if you hadn't been diagnosed and kept on eating gluten, you eventually would have gotten other symptoms.

That said, stick to the diet, do everything other posters have suggested, and you should hopefully see your iron levels going up in a few months. Unfortunately, you'll probably also start having reactions to accidental glutenings after you heal.

You should be thankful that you caught it early, and can heal without having to go through long years of suffering as many people do.

Good luck!

Peg

0

Share this post


Link to post
Share on other sites

You've already had great advice.

Just wanted to add - if you do not start reacting to small amounts of gluten - I'd suggest repeating blood tests at 3 months, 6 months and then annually thereafter. My Celiac Doc had me tested at these intervals even though I had strong reactions to small amounts of gluten from the beginning.

Welcome to the site - keep asking questions - it is the best way to speed up the learning process.

0

Share this post


Link to post
Share on other sites

Panda123, these are all great suggestions. I don't know if I noticeably react, either, but I have noticed an improvement in my bowels. I'm looking forward to not having to take a ton of supplements.

My suggestion is to order some books, particularly "Real Life with Celiac Disease" and read up. That book, in particular, is good because the chapters are short and very focused and include case studies. The book is a compilation by a lot of medical professionals, and addresses a broad spectrum of topics.

It may be helpful for you to read the relevant chapters (another great thing about having short, focused chapters - I skipped the ones about kids, and being pregnant!) and then to mark them for your family to read. It's important for them to know how important it is for your health to eat gluten-free, so as not to develop other autoimmune disorders and to reduce your increased risk of some cancers. The book mentions that something as small as 1/50th of a slice of bread is enough to cause an antibody reaction (which sets off a chain reaction, it's not just a small, focused area). That may be important for them to know!

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
      104,120
    • Total Posts
      919,468
  • Topics

  • Posts

    • Hi Alok, I suggest not eating any soy.  Soy is one of the top 8 food allergens in the USA.  Soy has other things about it that are not helpful to us.  Plus it is often sprayed with pesticides that are not so great for people.  Maybe you can try some other food for a while?  Also it might help to wash all your vegetables before using them. Just some ideas, I hope they help.
    • What she said!     The antibody panel is an important part of follow-up!
    • I have Celiac, Hashi's thyroid disease, Sjogren's Syndrome and Reynaud's Syndrome.  All have gotten better, inflammation wise, after 11 years gluten free.  I am very strict with my diet, never take chances if I feel the food is not really gluten free and limit the number of times I go out to eat.  I am not saying I never go out but it is normal for my husband and I to not see the inside of a restaurant for 3-4 months at a time and then I only eat at the places that have never glutened me.  I am lucky in that the state I live in has 3 restaurant chains that are run/owned by Celiac's, so they get it right every time. You have not been gluten free for very long, in reality.  It took me three years to completely rid myself of all symptoms related to the disease.  I was 46 at the time of diagnosis.  I know it is hard to accept that healing can take that long but you have to measure it differently.  Looking back, you should feel better than you did a year ago.  As time goes on, healing slowly takes place until you realize that certain problems have disappeared.  It is not as cut and dried as taking an antibiotic for an infection. http://www.drweil.com/drw/u/ART03424/Elevated-Creactive-Protein-CRP.html  Read this article on elevated c reactive protein. It is by Dr. Weil, who is a Harvard trained physician who chose to go the more natural route to healing people.  All his stuff is interesting.  Yes, your elevated level will most likely come down, as you heal better.  Pay attention to it but don't let it freak you out too much! 
    • Hi Calla, I think the safe answer is 12 weeks on gluten for a blood test.  I am pretty sure they say 2 weeks on gluten for the gut endoscopy.  But usually people/doctors don't want to  do an endoscopy before a positive blood test, so catch 22 there. There's a chance you still have active antibodies in your blood after 3 weeks off gluten.  But nobody can tell you for sure.  If you can get you doctor to test you now and in 9 more weeks if you are negative now, that might work.  If the doctor is willing to do 2 tests, that would be great. The best thing would have been to do all celiac disease testing before going gluten-free.  But sometimes it doesn't work out that way. The University of Chicago celiac center has an FAQ that answers some of your questions. http://www.cureceliacdisease.org/faq/i-dont-have-the-money-to-get-tested-for-celiac-disease-but-a-gluten-free-diet-makes-me-feel-better-is-it-okay-to-start-the-diet-without-being-diagnosed/ Welcome to the forum!  
    • Couldn't have said it better!  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,159
    • Most Online
      1,763

    Newest Member
    Anns
    Joined