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Recently Diagnosed But No Reaction To Eating Gluten


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10 replies to this topic

#1 Panda123

 
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Posted 24 September 2012 - 05:03 PM

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.
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#2 MitziG

 
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Posted 24 September 2012 - 05:36 PM

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!
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#3 nvsmom

 
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Posted 24 September 2012 - 05:44 PM

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.
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#4 Panda123

 
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Posted 24 September 2012 - 06:27 PM

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?
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#5 LauraB0927

 
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Posted 24 September 2012 - 06:27 PM

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!!
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"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#6 TGK112

 
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Posted 24 September 2012 - 07:36 PM

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.
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#7 cavernio

 
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Posted 25 September 2012 - 04:38 AM

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.
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diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#8 MitziG

 
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Posted 25 September 2012 - 05:00 AM

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!
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#9 Pegleg84

 
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Posted 25 September 2012 - 08:20 AM

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
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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#10 GottaSki

 
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Posted 25 September 2012 - 08:46 AM

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.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#11 archaeo in FL

 
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Posted 28 September 2012 - 03:04 AM

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!
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