Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My Poor Son :(


Mama2SandJ

Recommended Posts

Mama2SandJ Newbie

I don't even know where to begin...I am a mother of 2 children who both show symptoms of celiac disease....lets start witht the more severe my 2 yr old son...

Was a nursing baby dx'd with severe reflux (did better w/o meds) removed dairy from my diet he better not 100% but it was better...I made his baby food he never ate table food until 11 months at Thanksgiving he ate mashed potatoes/gravy & stuffing. He had already been dx'd also with eczema as well that worsened after that intake of new food, also he started having up to 10-12 bm's daily he was tested for a million things sent to a peds GI and they came up with nothing. In the waiting process things seemed to improve. We went on our merry way some days good some days not so good. He continued to have bouts of his eczema flaring badly and still couldnt tolerate dairy, allergist did a limited food (skin scratch test) all negative (even dairy) but he would vomit almost immediately after ingesting dairy. All along he is extremely sick, numerous ear infections, sinus infections, upper respiratory infections, pooping undigested foods occasionally, etc. Fast forward to today he is 2 1/2 years old and having extreme skin issues, his PCP told me she knows its some form of dermatitis but what kind ??? not sure. He also has brown spots on his bottom teeth, gums are bright pink, toenails yellowing, dark circles around his eyes, iron def anemic, and always has allergy type symptoms (i.e. runny nose, watery eyes, lots of wax in ear). Put him on a gluten-free diet he made significant skin/bowel improvements then I was ordered to put him back on gluten in order to test him. We just hit the 30 day mark and he had a full food allergy skin scratch, celiac panel & the normal CBC labs for anemia and all came back negative and normal! I almost cried!! :( I felt like there was no way these test could be negative! He has another peds GI appt next tuesday and I feel like they will again send me shuffling along because that is what we have been doing since the very first episode! I am considering using EnteroLab for him because I am so sure that is whats wrong. I think a big part of the problem for the docs who have seen him so far is his symptoms come and go sometimes they are extremely flared up but ususally by the time we get in to be seen he will make a little improvement, also he is not short in stature so they basically laugh at me and say "theres no way this kid has celiac!" :(

My daughter is now 10 and has ADHD, seasonal allergies (which are year round...hmm??? lol), and also has reflux. She had chronic/extreme constipation (still occassionally has problems) as a toddler she has behavioral problems that she cant seem to control and has also had problems with dairy. When we all went gluten free I couldnt believe the difference in myself as I have suffered from many of the same problems as my son with the low immunity and constant "allergy" symptoms, gut-ache (not nausea, vomitting or diarrhea but unexplained pain), I was even diagnosed with chronic malaise (fancy word for tiredness!) and a migraine disorder years ago. I guess call me crazy here but what do you all think??? I'm thinking celiac or even non-celiac gluten intolerance at least!

Please share your thoughts with me...I'd love to hear some opinions on EnteroLab! Im a single mom of these 2 blessings so I do not have money to waste for sure! $369 for the complete panel w/ genetic testing is alot of money to spend on testing especially for all 3 of us! Thanks for your thoughts!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Mom2J112903 Newbie

A month off gluten does not seem like enough time for a proper testing. We were told a minimum of 6 months for a *good* picture via scope.

Even our current GI says "if it walks like a duck, quack likes a duck, it most likely is a duck" even if pathology or labs say differently.

Celiac is also different than being allergic to any gluten.

My son's entire GI system is screwed up, from Dysphagia to GERD to DGE (Delayed Gastric Emptying) to Celiac to IBS (most likely IBD but due to the severity of his colon issues we can not get an accurate dx) to Megacolon, he was MISERABLE in every possible way. Even one of those dx can make a person miserable, so always check the entire GI system when dealing with GI symptoms IMHO.

pricklypear1971 Community Regular

Kids notoriously test negative. Especially a 2 year old. They also could have run incomplete panels... The list goes on. Read through threads in this section for more stories just like yours.

I'd suggest testing for all, except if you've been gluten-free that will invalidate testing. I'd find a good doctor who is willing to work with you, run vitamin panels on all of you-you too! Work to at least get a NCGI dx if you can't get a Celiac dx. If yall can get back on gluten (sounds tortuous especially for your son) you could pursue blood work and endoscopy.

Mama2SandJ Newbie

A month off gluten does not seem like enough time for a proper testing. We were told a minimum of 6 months for a *good* picture via scope.

Even our current GI says "if it walks like a duck, quack likes a duck, it most likely is a duck" even if pathology or labs say differently.

Celiac is also different than being allergic to any gluten.

My son's entire GI system is screwed up, from Dysphagia to GERD to DGE (Delayed Gastric Emptying) to Celiac to IBS (most likely IBD but due to the severity of his colon issues we can not get an accurate dx) to Megacolon, he was MISERABLE in every possible way. Even one of those dx can make a person miserable, so always check the entire GI system when dealing with GI symptoms IMHO.

We were only off the gluten for a short time around 4 weeks truly gluten free...thats how I feel about it too but seems everyone thinks I'm just searching for something that isnt there but clearly something is not right!

Mama2SandJ Newbie

We were only off gluten for a period of 4 weeks and once we went back on (symptoms returned in full force and worse!) we were on for 30 days before the panels were run. From I have read on other members posts and what i can find online they did a complete celiac panel. but after posting this last night i was reading somemore info and one article said the use of steroids even topical creams could affect your results in which we use for his dermatitis!

he goes to a peds gi on tuesday so we'll see what they suggest but i'm guessing i'll get the run around yet again! :(

i have read other posts about peoples symptoms coming and going...it would be interesting to see what his scope would show only being 2 i wonder if there is enough damage. i cant be tested because i dont have any medical coverage my daughter though i could ask about...thats why i was asking about Enterolab since you dont have to have a dr's order for those but i only find people who were positives and rave about it...is that coincidence or not? I'm not sure...

MitziG Enthusiast

You can't be tested- and you know gluten is a problem for you, so dx yourself and go gluten free.

As for the kids, I am not surprised your son was negative. Blood tests are notoriously innacurate in little kids, and if he had any antibodies, they likely disappeared in your 4 weeks gluten-free. A month back on it was likely not enough to rebuild them.

Ask for a copy of the labs that were done, and post them on here. We will let you know if any are missing. (Very likely as most docs run only 1 or 2 of the older, less accurate tests)

Would your ped have him scoped? Better way to view the damage, although biopsy can miss it too.

Have your 10 yr old get the full panel now. Keep both of them on gluten until all testing is done. If it is still negative, then definitely assume it is at least gluten-intolerance and go 100%gluten-free. If you can get a dx for them, that is better though, as they will need accomodations in school.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jay Heying replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

    2. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

    3. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    4. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    5. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,883
    • Most Online (within 30 mins)
      7,748

    Jrgrimes914
    Newest Member
    Jrgrimes914
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jay Heying
      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.