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
      104,642
    • Total Posts
      921,566
  • Topics

  • Posts

    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
    • So far dairy seems to be OK, as are eggs. I like canned chickpeas so will carry on with those. Beans I had ruled out at one point with the doctor's recommendation to go with the low FODMAPs diet but will reintroduce those now I know it probably wasn't that causing the problems.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,647
    • Most Online
      3,093

    Newest Member
    iFitCeliac
    Joined