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

Just Joined And, Guess!, Have Questions
0

6 posts in this topic

Hello everyone,

I have been getting an awful lot out of reading these boards over the past little while and have just joined so I can partipate. It feels like a really nice shared space.

I am writing because I have been concerned for my son. almost 18 months old, for many months already. Doing a search on the internet of his main symptoms brought celiac disease into view. The symptoms have been: chronically distended belly, very small size (although weight good), some diarrhea/constipation, frequently flushed and sandpapery cheeks, very poor sleep, anemia, and, above all, chronic extreme (and to us for months, incomprehensible) irritability with out of the blue fits of screaming.

Cutting a long story short, antigliadin tests were done and came back negative (iga <1!). My son had been off gluten for 3 weeks when blood was taken as I had figured out by then that there must be some dietary thing happening. The change in him since he has been gluten-free is spectacular, with the screaming completely stopped and the irritability down to what I would call toddler normal. He is a transformed child (and it feels terrible to know he was suffering physically for so long ...).

Anyway, that there is some problem with wheat is obvious, but this is where I have questions. What IS the problem?? I have come to understand that negative bloodwork does not necessarily equal absence of celiac disease. I really would prefer to have an idea of whether this is simply a transitory childhood intolerance (which is what I am hoping!) or whether it is in fact a lifelong disease. Since you have had vast and varied experiences, I am hoping you will share thoughts, suggestions as to next steps, similar experiences and what you did etc.

The one thing is, at this stage it is out of the question for me to put him back on gluten. There have been 3 also very spectacular and unplanned gluten challenges (er, mistakes on my part re: labels) which show he has become highly sensitized to the stuff even in trace quantities since becoming gluten-free.

I'm sorry this is so long. Life has been intense recently and makes it hard for me to fit it into a reasonable paragraph! Thank you very much in advance for your input. Kevyn

0

Share this post


Link to post
Share on other sites


Ads by Google:

Well, there are two issues...

1. If his IgA was that low, he may have been IgA deficient, in which case a low IgA reading wouldn't be able to tell you if he was celiac or not. (Did he have the full panel of blood tests, including tTg?)

2. He had been gluten free for three weeks. There may not have been any further antibodies in his system to show up on the test.

You could try an allergist, to see if a different test can determine wheat allergy (as opposed to gluten intolerance - two different things), or you can go off the the results of the dietary challenge.

0

Share this post


Link to post
Share on other sites
My son had been off gluten for 3 weeks when blood was taken as I had figured out by then that there must be some dietary thing happening. The change in him since he has been gluten-free is spectacular, with the screaming completely stopped and the irritability down to what I would call toddler normal. He is a transformed child (and it feels terrible to know he was suffering physically for so long ...).

In my opinion, this statement above in itself is a TEST! An improvement on a gluten-free diet is considered a test and accepted by some doctors out there. If your child had Celiac or gluten sensitivity it is a "lifelong" illness and he will always have to adhere to a gluten-free diet.

Good luck to you and your family

0

Share this post


Link to post
Share on other sites

Thanks for your ideas. I agree that the difference in diet is a test in and of itself and actually a very powerful one for seeing that wheat/gluten is a general problem. I'm just feeling somehow at this early stage that I want a clearer picture about what is underlying the whole thing!

With regards to IgA deficiency - is it only of interest if the IgG is high (which was not the case)? As far as I know, only the antigliadin tests were done. I only found out about all the other tests AFTER these had been done so didn't know to ask for them.

I'm just feeling unsure about how far to pursue this right now. I would be grateful for any more thoughts on the matter (and then I will start moving on!).

Thanks so much -

Kevyn

0

Share this post


Link to post
Share on other sites

If you can't put him back on gluten because of the terrible reactions, there might not be much more you can do from a testing standpoint. For an accurate test, he has to be eating gluten.

If he has an allergy, it's possible he can outgrow that. But if it's celiac, it's celiac for life. Some people do indeed seem to go into remission as teenagers but it comes back. In addition, even when it's in "remission," you might be setting yourself up for other autoimmune diseases and problems if you eat gluten.

richard

0

Share this post


Link to post
Share on other sites




Another thought is to do a stool test via enterolab. (www.enterolab.com) They claim to detect gluten sensitivity even after a period of being gluten-free as the anti-bodies linger in the stool longer than in the blood. There is also something called a "rectal challenge" but that might not be something you want to put your little one through!

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
      104,688
    • Total Posts
      921,755
  • Topics

  • Posts

    • Yeah I ended up allergic to corn, olives, sesame, whey, and peanuts and intolerant to dairy, soy, yeast, enzyme issues with breaking down meats, and egg yolks, along with extreme bloat with any kind of carbs/sugars in moderate amounts. And very adverse reactions to certain artificial sweeteners. So your not alone in all the other issues cropping up, it happens as our bodies adjust.  I eat a bunch of stir frys with veggies, egg whites, plenty of  avocados, and toasted and raw forms of almonds, coconut, cashews, walnuts, hemp seeds, pumpkin seeds, flax seeds, sancha inchi seeds, chia seeds, and sunflower seeds in all forms including making them into butters, spreads, and incorporating them into sauces.   Most meals are forms of soups, omelettes, and stir frys. I do the seeds and nuts on rotation same with my veggies and snack on fruits in small amounts along with some homemade baked goods I make for markets. I do suggest a rotation of foods, my dietician said I need to rotate my foods to prevent more issues, making sure I am off one one for at least 7-14 days at a time completely. I find changing up the spices and rotating my cuisine base works well. I also make puddings, and protein shakes along with nut/seed milks, and different bases and extract flavorings to get my random cravings Taken care of. Guess take what you can from this and and see how it can help you,    As to the tinging, I ended up with both B vitamin and magnesium deficiency issues, the magnesium one caused a fire like tingling in my arms, legs and back, along with muscle pain. Ended up on a doctors best powder form of it so I can dose it out right, and found epsom salt bathes helped.  
    • Hi, I've gained so much knowledge on this forum over the past few months, which I am so thankful for. I can see how much hell people are going through with this disease and it's so lovely to see how much support and advice people give to others on here. I'd like a little bit of reassurance and advice myself from anyone that can help. I've been gluten free for six months. Two weeks after going gluten free I realised I also had a problem with corn so cut out processed food. Over the following weeks and months I continually had problems with food; fruit, dairy, a lot of vegetables, nuts, soya....it's basically dwindled down to just eating potatoes (not white potatoes), cucumber, lettuce, small amounts of red onion, spring onion, sprouts and beetroot. There may be more things I could be okay with but to be honest I'm too scared to try.  Is this all normal? Am I an extreme case? I've been taking some digestive enzymes and probiotics for about six weeks, my acid reflux has dramatically decreased but I always have a lot of loud noises going on in my guts, I'm guessing this is the probiotics working.  I've lost nearly 3st in weight since this started - which I'm not complaining about as I was overweight due to thyroid problems. I've had loads of blood tests done recently, all organs are working 'great' according to my doctor, the only thing they've picked up on is ketones, I seem to be having a glucose problem, which might explain my exhaustion and weight loss. I also have permanent numbness and sometimes tingling in one of my legs and sometimes hands and one shoulder, I thought it could have vitamin B12 deficiency but that's okay according to blood tests. I would be greatful for any replies. Thanks for reading.
    • Hi everyone, I am doing job in restaurant at evening 5 to 12 during working hours no time to do a dinner. I'm thinking to make a shake but don't know the gluten free vitamin or supplement brand which one is good for me and easily available in Berlin Germany to make me fit cause last one week i feel weak. I'm 28 year old. Sincerely
    • Hey there just wanted to warn anyone that has other allergies- these crackers may not be a good choice! I'm mildly sensitive to MSG- I only react if there's a giant amount like in Chinese food or Ramen noodles, etc.  I literally have a to eat TONS of a the offending food before reacting.  Anyway, I was excited to try these Trader Joes pumpkin crackers, kept hearing about them on the radio .... and they're gluten free!  (I have Hashi's).  I ate about 3/4 of the box last night. Woke up this morning with a red itchy face and nasal congestion, headache, anxiety. Hallmark symptoms for me of high MSG intake. (It does say yeast extract on the side but it's pretty far down the list). So if you're sensitive.... stay away! Apparently these particular crackers are loaded with it. 
    • I admit, my blood panel was "mildly positive" with only the DPG IGA being the positive, yet I had a Marsh Stage IIIB (pathologist report) though my visual on the endoscopy was fine.  celiac disease can be hard to diagnose, that is for sure.  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,688
    • Most Online
      3,093

    Newest Member
    AbuBakar
    Joined