Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Where Do I Start?


chasesmom

Recommended Posts

chasesmom Newbie

When my son was 4mo. old I sought help on-line for his fussiness/gas/liquid stools. My pediatrician tested for lactose intollerance and said he was positive. Going dairy-free did not improve things. After much research we tried gluten-free and dairy-free diet. His condition improved greatly. He is now 17months old and my MD is advising we go through the testing to prove celiac disease. Where do I start? What will I have to subject my son to? Will he have to have gluten before the testing? (My MD says yes but I am so fearful of the results). Any advise??


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

If all of your son's problems have resolved I personally think you have your answer. However, when he gets to school you might need certified proof to get cooperation from the school officials.

The bad news is your son would need to eat gluten every day for 8 to 12 weeks to make sure you get an accurate test. Even then the bloodwork could come out negative and then your doctor might start trying to tell you he doesn't have it. Tough choice.

richard

gf4life Enthusiast

Have you considered genetic testing? I would recommend testing through Enterolab, since it is cheaper for the gene test, and they also test for other genes related to gluten intolerance, and not just Celiac Disease. We have two of each in our family(so far, my husband hasn't been tested yet), two Celiacs and two who are gluten intolerant without Celiac. Check with your doctor if this would be acceptable for a diagnosis, since you don't want to put your son back on gluten. It can sometimes take years to get enough damage to prove Celiac through blood tests/ biopsy, and I doubt you would want your child to have to suffer through his childhood.

Check out Enterolab. Open Original Shared Link

God bless,

Mariann

chasesmom Newbie

Thanks for the info. I will check out the genetic testing. We are changing insurance so cannot make any new appt. untlil after July 1. My ped. thinks I am nuts anyway. My son remains well above 50th % for growth, so in his eyes, does not fit profile for celiac. Friends and family also think I am nuts which is why I was hoping some kind of positive test results would validate my mother's intuition. Thanks for your time!

gf4life Enthusiast

At Enterolab you do not need a doctors order for the tests. You can order them yourself. Also, most insurance won't pay up front for it, you have to pay out of pocket, but some insurance will reimburse you after the fact. You might want to check with your new insurance when it goes through.

My kids were never really "underweight", although I could see how little they were growing and how much smaller they were compared to their friends and classmates. We probably would never have known they had a problem, except I pushed for testing for myself, and for them. I have the problem of being overweight and my GI doctors all thought I was crazy to think I was Celiac. I do admit I was probably at the early stages of damage, but the symptoms were unbearable! Most doctors are still looking for the end result of years of damage to the intestine, when we know now that it can be diagnosed at an earlier stage and you will be able to heal much quicker. I was not willing to wait until I was half dead, knowing that gluten was my problem, just to get an "official" diagnosis from a doctor. It is my choice to feed my family a gluten free diet, and the Enterolab tests helped me to know I was doing the right thing.

My kids are growing rapidly now (my middle child gained 5 lbs and 3/4 of an inch in less than 2 months on the diet! He just turned 8) and I'm sure their GI doctor will be surprised when they go in for a checkup. They do not have an official diagnosis as their blood tests come back inconclusive, yet their Enterolab results show positive antibody levels to gluten, and the genes to back up either Celiac (for two of us) or gluten intolerance (for the other two).

I hope you are able to get your answers quickly.

God bless,

Mariann

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,916
    • Most Online (within 30 mins)
      7,748

    nonleadedmilk
    Newest Member
    nonleadedmilk
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hi, @Dawn R., I get gluten ataxia.  It's very disconcerting.   Are you still experiencing gluten ataxia symptoms eating a gluten free diet?  
    • knitty kitty
      @Jordan Carlson, Sorry to hear you're having a bumpy journey right now.  I've been there.  I thought I was never going to stop having rashes and dermatitis herpetiformis breakouts and hives, oh, my! I went on a low histamine Autoimmune Protocol Diet (AIP diet).  It gave my digestive system time to heal.  After I felt better, I could add things back into my diet without reactions.   In Celiac Disease, we make lots of histamine as part of the autoimmune response.  There's also histamine in certain types of food.  Lowering histamine levels will help you feel better.  Foods high in histamine are shellfish, crustaceans, fermented foods like pickles and sauerkraut, canned foods, processed meats and smoked meats like bacon and ham, and aged cheeses.  Grains and legumes can also be high in histamine, plus they contain hard to digest Lectins, so they go, too.  Cutting out corn made a big improvement.  Some Celiacs react to corn as though it were gluten.   Dairy can be problematic, so it goes.  Some Celiacs have lactose intolerance because their damaged villi cannot make Lactase, the enzyme that digests lactose, the carbohydrate in dairy, while some Celiacs react to Casein, the protein in dairy that resembles gluten.  Dairy is high in iodine, which makes dermatitis herpetiformis flare up badly.  Eggs are high in Iodine, too.  I even switched to pink Himalayan salt, instead of iodized salt.  Avoid processed gluten free facsimile foods like cookies and breads because they have lots of additives that can cause high histamine, like carrageenan and corn.   Yes, it's a lot.  Basically veggies and meat and some fruit.  But the AIP Paleo diet really does help heal the intestines.  My digestive tract felt like it was on vacation!   I'd throw meat and veggies in a crock pot and had a vacation from cooking, too.  Think easy to digest, simple meals.  You would feed a sickly kitten differently than an adult cat, so baby your tummy, too! Take your vitamins!  It's difficult to absorb nutrients from our food when everything is so inflamed.  Supplementing with essential vitamins helps our absorption while healing.  Niacin B3, the kind that flushes (nicotinic acid -not the same as nicotine in cigarettes, don't worry!) REALLY helps with the dermatitis herpetiformis flares.  Niacin and Thiamine make digestive enzymes so you can digest fats.  Add in healthy Omega Three fats, olive oil, flaxseed oil, avocado oil, coconut oil.  Vitamin D helps lower inflammation and regulates the immune system.  Thiamine helps mast cells not to release histamine at the slightest provocation.  Benfotiamine, a form of Thiamine B1, has been shown to promote intestinal healing.  Pyridoxine B6, Riboflavin B2, Vitamin C and Vitamin A help heal the digestive tract as well as the skin.  Our outside skin is continuous with our digestive tract.  When my outside skin is having breakouts and hives, I know my insides are unhappy, too.   Talk to your doctor and nutritionist about supplementing.  Blood tests are NOT accurate measurements of B vitamin deficiencies.  These tests measure what's in the bloodstream, not what is inside cells where vitamins are used.  Supplementing with essential vitamins and minerals made a big difference with me.  (My blog has more of my bumpy journey.) Let me know if you have more questions.  You can get through this!    
    • Jordan Carlson
      Hey there @knitty kitty! Thanks for checking in. Things are not really going as planned for myself unfortunately. As much as I feel better than I did while eating gluten, I still seem to be reacting to trace amounts of gluten in gluten free foods. I constantly break out in rashes or hives after eating. My dermatitis is constantly flaring up. I take every precaution possible to be as gluten free as I possibly can and have simplified my diet as much as I possibly can but still cant get past this point in my recovery. If this is the case, I believe it would be considered non-responsive Celiac Disease or Refractory Celiac Disease. The only time I have ate gluten purposely in the last year was for the 3 weeks leading up to my endoscopy for diagnosis. Aside from that, the last year has been a constant disappointing effort to be gluten free with the same result of getting stuck at this point. I have a appointment with my doctor next week to discuss some treatment options and what the next steps are in trying to get my body to push past this point.   I will keep you posted! 
    • knitty kitty
      @GardeningForHealth, How are things going for you?   I found another topic you might be interested in... To Be or Not to Be a Pathogen: Candida albicans and Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6906151/
    • knitty kitty
      @Jordan Carlson, How are you doing now?  Your post slipped by, but I had to let you know you weren't alone.  I've had cravings for raw meat my whole life.  It's due to being low or deficient B vitamins, specifically Thiamine.  Meat is a great source of B vitamins.  Cooking meat destroys some of the vitamins, so a craving for raw or rare meat shows up.   Thiamine and Niacin make digestive enzymes that will help you digest fats.  Thiamine will help improve gastroparesis, anxiety, vertigo, and heart palpitations.  Niacin will help Dermatitis Herpetiformis.  I get dermatitis herpetiformis blisters on the palms of my hands, too. Really active people (especially if outdoors in hot weather) need additional Thiamine.  If a high carbohydrate diet is eaten, additional Thiamine is needed, too.  I take Benfotiamine, a form of Thiamine that helps heal the digestive tract.  I also supplement magnesium because Thiamine and magnesium work together.   Hope you can update us on how you're doing.  
×
×
  • Create New...