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

Need Some Help...(very Long)
0

9 posts in this topic

I am a mommy to 6dc. I have Hashimoto's and my middle dd does as well. I am posting for some direction.

Our 3yo ds has multiple food allergies. When he was about 13mo, he was tested and wheat was positive, but much lower compared to all of the other foods that he was positive to. We kept wheat in his diet for awhile, but eventually took it out due to vomiting and diarhea. We tried Spelt and he screamed all day long. I took wheat out, but gave him other glutenous grains. He would not eat rye after while. Barley was the only grain that he seemed to sometimes tolerate. I began reading about wheat allergy and gluten intolerance. About this time, he developed a blistering rash on his bottom. I took him to the ped and he dx impetigo. After two unsuccessful courses of antibiotics, I decided to treat it on my own. Several people told me that impetigo is highly contagious. None of the other 7 people in the house ever had it. I read about impetigo and noticed that he did not have the classic yellow oozing and crusting. I DID notice a usual pattern. I could see places on his bottom where I knew the sores were going to come up before they were sores. Then the sores would come, blister, then were open sores, and finally they would heal and then go away. The more I read, the more they sounded like DH. At this point, I took him off of gluten entirely and the sores disappeared. Last Jan, we did a wheat challenge as both his skin test and RASTs were neg. He did well until the end when he became very irritable, but I chalked it up to the fact that eating a box of plain shredded wheat and being stuck in the drs office all day is not fun. We came home and began feeding him wheat. I had to make everything that he ate due to his allergies. We did this for several weeks. I noticed a behavioral change in him, but though it was most likely due to his age (2yo at the time). I have episodes of flu-like symptoms and pain (which we are not sure of the cause) and so I was unable to make wheat foods for him for 2wks. At about the 2wk mark, I suddenly noticed that ds was happy!! Looking back, I saw how he had been rolling on the floor crying. I would pick him up and he was unconsolable. He would bite my other children for no reason. When I commented to dh, he said "I am sure he was having abdominal pain!!" He has once again been gluten free since. My allergist wants ds on wheat. I really want to have him tested, but I know he needs to be on wheat. I have 3 other children (all on wheat) who I am concerned about, but nothing they have warrents a scope IMHO. One dd has been tested twice with the Ttg test and was found to be normal. I stil wonder about her. She is below the 5th % for height.

I gave him wheat for the first time today in a long time. I have decided that I will give him wheat until I see problems and then we will go to the ped and talk. I hate to see him go through this, but I feel it is what I need to do :( How long before I can expect to have a valid test? Should I keep a diary? How do I convince the ped to test him after I have put him back on wheat? I am hoping that if ds comes back pos, then we can figure out if this is the problem with my other kids.

0

Share this post


Link to post
Share on other sites


Ads by Google:

one note---you might want to see a GI instead of an allergist as Celiac and DH is an autoimmune disorder, not an allergy.

I'm sure there are others on here who can offer more advice.

good luck!

0

Share this post


Link to post
Share on other sites

Please keep in mind that allergies and celiac are very different (apples to oranges). Have you talked to a gi doc? Also keep in mind that if your dd was off of gluten her test results will not be accurate.

I am so sorry to hear of your struggle. As a parent I know first hand how horrible it is to watch your children suffer. Do some research and talk to a good gi doc who understands celiac. Then take a deep breath and do the best that you can do. That is all any of us can do.

Hez

0

Share this post


Link to post
Share on other sites

I do know that Celiac and Allergy are different. The problem we are having is that all allergy tests are coming back neg. The pos test was only sligthly pos and I suspect it was a false pos. His reactions have never been immediate and are all GI (mostly lower GI). I am not sure what IS going on. I have read about gluten intolerance that is NOT Celiac. At this point I would really like to rule it out or find out for sure what is the problem. The allergist is no help with this problem and is pressuring us to give him wheat. I can't see a GI without the ped telling us to. I have decided to give it to him, but I need to know how long it is necessary before the test is valid. I do believe that wheat could be a problem without him having Celiac, but with the wierd blistering rash and the Hashimoto's and other Autoimmune diseases in the family, I am suspicious.

0

Share this post


Link to post
Share on other sites

has your child been tested for Celiac? Or only allergies?

If he has Celiac, a wheat allergy test will come back negative.

0

Share this post


Link to post
Share on other sites




If he's getting dermatitis herpetformis, don't bother with the endoscopy, have the sores biopsied by a good dermotologist. If he's got DH, he's got celiac, and he's got to stay gluten-free. If he doesn't have DH, he could still have celiac, but regardless of symptoms, he'd need to be eating wheat for three months to have a reasonable confidence that a endoscopic biopsy will pick up intestinal damage. The skin test and RAST tests mean absolutely nothing when testing for celiac disease, though, so they never could have told you anything.

0

Share this post


Link to post
Share on other sites
If he's getting dermatitis herpetformis, don't bother with the endoscopy, have the sores biopsied by a good dermotologist. If he's got DH, he's got celiac, and he's got to stay gluten-free. If he doesn't have DH, he could still have celiac, but regardless of symptoms, he'd need to be eating wheat for three months to have a reasonable confidence that a endoscopic biopsy will pick up intestinal damage. The skin test and RAST tests mean absolutely nothing when testing for celiac disease, though, so they never could have told you anything.

Thanks so much for this reply. This answers some questions. If the rash returns, I will definitely be speaking to the dr about it and asking for a biopsy. I know I should have asked way back then. I am sure if ds gets sick from the wheat that the dr will listen to me when he sees how he gets.

0

Share this post


Link to post
Share on other sites

another little tidbit that you might already know....if it is dh/celiac, the problem is gluten, which is found in wheat, rye, barley, malt, and oats.

so something that is wheat free does not necessarily mean it is gluten free!

gluten can also be hidden in many places (soy sauces, modified food starch, etc)

good luck, we are all rooting for you!

0

Share this post


Link to post
Share on other sites

Sorry I misunderstood your post. I have heard that you need to be eating gluten for 3 months to get a accurate blood test. My Mom's test came back boaderline because she had gone gluten-free before the test (about 2 months gluten-free). There are several families that have decided to change their kids diet without a firm diagnosis. Based on history and behavior alone. I can only imagine how frustrating this is for you. I am sorry.

Hez

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
      61,689
    • Most Online
      3,093

    Newest Member
    Kelly Calcagno
    Joined