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

Gluten Challenge

Nic

Recommended Posts

Nic Collaborator
Nic
Posted

My 4 year old son Lucas has not been diagnosed as a Celiac. His brother has. Lucas does have some syptoms that match Celiac but when I had his antibodies tested through the lab my insurance company uses he tested negative. So I looked into Enterolab which my doctor has never heard of but suggested I get his blood tested with Prometheus (they ran my older son's blood). I am apprehensive about using Enterolab because of my doc not knowing them but really don't want to put him through more blood work (he has had a lot of problems since infancy and has had more blood drawn then I have in my entire life). So I figured the easiest way to go is to do a gluten challenge. My question is this: his symptom is constipation (as was his brothers) and I know that does not clear up quickly. How long do you usually do a challenge before you decide it is not working. Obviously if he gets better I will know it is working but I was wondering how long to wait if it is not. Anyone have any experience with this?

Nicole

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

I would try the gluten-free diet for at least 6 months before deciding it isn't working. But that's just me.

CarlaB Enthusiast
CarlaB
Posted

So, what you're talking about is how long to have him OFF gluten before you can tell it's working? Or, is he already off gluten and you want to challenge it?

If he's already off gluten, it shouldn't take more than a few days for symptoms to start showing up again.

If you're taking him off gluten to see if his symptoms improve, I'd do it for at least a couple months. I know some around here have said that they didn't start feeling better for a longer time than that, but I'd bet that you'd start seeing some changes right away, and others after a couple months.

I was tested by Enterolab. Dr. Fine's research is not yet published, but he has had a good correlation between his tests determining someone is gluten sensitive and them having a positive response to the diet. This is cutting edge research, and basically, those of us using his lab are putting trust in newer methods that are not proven enough to be trusted by doctors across the board. I was very happy with their service, and their results were of no surprise to me. Also, one of my daughters tested positive, the other I had tested did not.

Nic Collaborator
Nic
Posted
  • Author
I was very happy with their service, and their results were of no surprise to me. Also, one of my daughters tested positive, the other I had tested did not.

My original plan was to use enterolab but it made me nervous that my doc didn't support it. I guess I worry about a false positive because while it would be no harm done if he ended up eating gluten free for no reason, it would be very hard to take away his favorite foods. He is not like my older son. He is developmentally delayed and while his cognitive skills (letters, numbers, etc) have been on target, his ability to communicate is delayed. I have a hard time explaining things to him and having him accept it. His brother was easier because I was able to explain what the problem was and he accepted it. It will not be as easy this time. Anyway, that is neither here nor there if he is Celiac, but if he is not I don't want to put him through it. I am sure Dr. Fine is "fine" :P and can be trusted but it makes me uncomfortable to not have the support of a doctor. So we will probably just use prometheus or try removing gluten. I am going to give it some more thought, thanks for the help.

Nicole

SarahTorg Apprentice
SarahTorg
Posted
My original plan was to use enterolab but it made me nervous that my doc didn't support it. I guess I worry about a false positive because while it would be no harm done if he ended up eating gluten free for no reason, it would be very hard to take away his favorite foods. He is not like my older son. He is developmentally delayed and while his cognitive skills (letters, numbers, etc) have been on target, his ability to communicate is delayed. I have a hard time explaining things to him and having him accept it. His brother was easier because I was able to explain what the problem was and he accepted it. It will not be as easy this time. Anyway, that is neither here nor there if he is Celiac, but if he is not I don't want to put him through it. I am sure Dr. Fine is "fine" :P and can be trusted but it makes me uncomfortable to not have the support of a doctor. So we will probably just use prometheus or try removing gluten. I am going to give it some more thought, thanks for the help.

Nicole

oooh, Nicole!!! This sounds like my son!

He is now almost 7 years old, and for years he took speech therapy, and I could NOT have a conversation with my son. Therapists said he was autistic. He has a hard time focusing on what people say, or following directions.

He walks around like he is in a fog, or stoned like. He is fascinated with peoples eyes and other strange things.

I cut gluten out of his diet after cutting it out of mine because of a skin rash I had. (dh) My son showed drastic improvement!!! Last week he ate lots of gluten foods after being off of them for a few months. I decided to keep letting him have it to see if it was truly the food, or if it may have been a phase.

on about day four, I couldn't stand my son. LOL He could NOT pay attention to anything. He put his clothes on backwards, and just stared at things like they were magic. LOL His temper would flare easily, and He was constantly thirsty.

So, if my reply here can help you make any decisions, I'll be glad I could share my experiences!

Sarah

Nic Collaborator
Nic
Posted
  • Author
oooh, Nicole!!! This sounds like my son!

He is now almost 7 years old, and for years he took speech therapy, and I could NOT have a conversation with my son. Therapists said he was autistic. He has a hard time focusing on what people say, or following directions.

He walks around like he is in a fog, or stoned like. He is fascinated with peoples eyes and other strange things.

I cut gluten out of his diet after cutting it out of mine because of a skin rash I had. (dh) My son showed drastic improvement!!! Last week he ate lots of gluten foods after being off of them for a few months. I decided to keep letting him have it to see if it was truly the food, or if it may have been a phase.

on about day four, I couldn't stand my son. LOL He could NOT pay attention to anything. He put his clothes on backwards, and just stared at things like they were magic. LOL His temper would flare easily, and He was constantly thirsty.

So, if my reply here can help you make any decisions, I'll be glad I could share my experiences!

Sarah

Sarah,

Thanks for the input. My son is always thirsty too. Especially when he was younger. He would drink all the time. As an infant and even now as a 4 year old, I have never seen anyone urinate so heavy. He was tested for diabetes and it was negative. And even though he doesn't seem to comprehend cause and effect, he is brilliant in other areas. We jokingly call him "rain man" because while he has so many delays, he was able to tell you what an octagon was at 2 years old and he didn't start naming colors with green or blue, he went right to all the crazy colors. He can match my near 6 year old academically but can't seem to control his impulses when he wants something. What makes it more difficult is that he is 52 pounds and hard to physically handle (his weight is not due to overeating, he eatsnext to nothing, docs. also tested him for hypothyroid). It has been the never ending battle. Anyway, thanks for the help.

Nicole

aprilh Apprentice
aprilh
Posted

it takes approx 1 year for your gut to heal on a gluten free diet. For me, I don't like to mess around and I don't care if my pediatrician heard of enterolab because he ignored me everytime I talked of my sons poop problem. I took it upon myself, ordered the test, and handed him the results. THEN he took the time to go on the website and learn. He agreed gluten free diet would be best and my son showed positive results within 2-3 weeks. Now, since he was hardly growing, I have him on a Hypo-allergenic protein shake, a L-glutamine amino acid (to heal the gut), and a good quality proibotic. I mix it all in to a protein shake and he loves it! We have one everyday. Now his little face is filling out and gaining weight. I also see a naturopathic dr. They have the same schooling as MD's except their last 2 years they go off to learn about nutrition and other alternative approaches to healthcare. I choose to see both for a rounded out health plan. She is the one that recommended the protein shake.

We also did a urinalysis to see what minerals he might be low in since he pooped so much all his life ( he is 2 years old) It came back with NO detectible levels of iron. So I am supplementing. The pediatrician never once talked about looking into that.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,544
    • Most Online (within 30 mins)
      7,748
    Jem68
    Newest Member
    Jem68
    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

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.