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 Sons Ttg High And Has To Remain On Gluten Till Test

mwapril

By mwapril
in Coping with Celiac Disease

Recommended Posts

mwapril Newbie
mwapril
Posted

Hello

My son just recently had a ttg done last week. My doctor said that is was significantly elevated and that we have to undergo an endoscopic biopsy of the small bowel. I was told that he had to remain on a gluten diet until test day ( Aug 10) otherwise the test is of no value. How can I give him a regular diet when I know that gluten is like a poisen to him?? He is only 6 years old and seems to have all the classic symptoms, his appetite is nonexistant and complains of feeling like he is going to be sick, his belly is bloated beyond belief. It just seems so unfair that the hospital cannot get him in sooner. To me it is a long wait. Any tips or ideas of what I can do would be helpful.

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

Celiac.com Sponsor (A8-M):


eKatherine Apprentice
eKatherine
Posted

I missed something. You know gluten is poisoning him, and you know he is healthy on a gluten-free diet. What do you need the test for? The doctor is supposed to be working for you and your son's health.

wolfie Enthusiast
wolfie
Posted

Can they get you on a cancellation list to possibly get your son in sooner? My son didn't even have his first GI appt scheduled until 8/15, but I called and they got us in last Friday and his endoscopy is today now. My son's ttg was very high, too. I considered just doing the gluten-free diet and skipping the endoscopy, but b/c he is so young and the gluten-free diet is for life, I wanted to get the endoscopy done since he was still on gluten.

Good luck!!!

Suzanne M. Rookie
Suzanne M.
Posted
Hello

My son just recently had a ttg done last week. My doctor said that is was significantly elevated and that we have to undergo an endoscopic biopsy of the small bowel. I was told that he had to remain on a gluten diet until test day ( Aug 10) otherwise the test is of no value. How can I give him a regular diet when I know that gluten is like a poisen to him?? He is only 6 years old and seems to have all the classic symptoms, his appetite is nonexistant and complains of feeling like he is going to be sick, his belly is bloated beyond belief. It just seems so unfair that the hospital cannot get him in sooner. To me it is a long wait. Any tips or ideas of what I can do would be helpful.

I found a lab in Oregon(I am in NY)that does gene testing with just a cheek swab. If he has all the classic symptoms and you want to forgo the biopsy like we did then I urge you to do this test. It will show if he carries the gene. I have found that doctors do not understand much about celiac. There are 3 of us in my family with it. First blood tests came back negative, then biopsies came back negative only to leave them with the only optionn left which was gene testing, BINGO! So, I chose to bypass all the traditional testing and found I have the gene. My son and daughter are now having the test done to see if they too have the gene. We think that if you carry the gene you need to eat gluten free, or pose the risk of hurting you body without realizing you are doing so.

ravenwoodglass Mentor
ravenwoodglass
Posted
Hello

My son just recently had a ttg done last week. My doctor said that is was significantly elevated and that we have to undergo an endoscopic biopsy of the small bowel. I was told that he had to remain on a gluten diet until test day ( Aug 10) otherwise the test is of no value. How can I give him a regular diet when I know that gluten is like a poisen to him?? He is only 6 years old and seems to have all the classic symptoms, his appetite is nonexistant and complains of feeling like he is going to be sick, his belly is bloated beyond belief. It just seems so unfair that the hospital cannot get him in sooner. To me it is a long wait. Any tips or ideas of what I can do would be helpful.

IMHO, doctors in this country are so far behind when it comes to the diagnosis of celiac. You know your son needs the diet. If you really feel you have to put him through the invasive procedure to 'prove' to the doctors that he is celiac then I agree you need to have the test moved up. Personally with the risk of the endo coming up a false negative and the risk of the procedure itself I would just get him on the diet. Everyone in our family is at least gluten intolerant and 2 are clearly full blown celiacs. The only one of us who was endoscopy proven is the only one who has abandoned the diet. She went to a doctor who is supposed to be an expert in celiac and was rebiopsied after a couple years on the diet. This 'expert' told her she has no damage, (of course not it had healed!!!!) and that she never did and all her problems were stress from my being ill. So now she is by herself, in a big city and who is going to help her on the nights when she is vomiting and seizing on the bathroom floor? Who is going to remove all the sharp objects and hide the pills when she starts getting depressed and paranoid? She is 19 and an ?adult? and we are helpless. Personally I put no faith in doctors at least not in the US. They are money driven and in the hip pockets of the pharmacutical companies. What are you going to do if the doctor says the endo was negative? Most likely you will put him on the diet anyway so why are you going to put you DS through this if not to just make the doctor happy..... and pay for his new rec room?

Guest nini
Guest nini
Posted

my daughter is 6. she was dx'ed by dietary challenge ONLY when she was 3... (well that and genetic predisposition, as I had just been positively dx'ed)...

if you have positive bloodwork results, your son absolutely has this, and I am aghast at the insistence of these Dr.s in putting children through the invasive biopsy, which may or may not show damage YET, just to prove to themselves that the elevated tTg's mean something...

my advice, cancel the biopsy, go ahead and go gluten-free with your son, if you want confirmation, watch how he improves on the diet. You DO NOT need a Dr.s permission to go on this diet, nor do any of us NEED a dx of Celiac on our permanent record. (I was denied health insurance because of it)

get your pediatrician on board with you and tell the ped. that you want a dx based on positive blood work and positive dietary response (positive dietary response is THE MOST valid diagnostic tool anyway)... if they won't dx Celiac based on that, tell em that's ok, you'll keep him gluten-free anyway, but you want his chart to reflect Gluten Intolerance. You have to treat it exactly the same as Celiac, as it's the same thing anyway.

Feel free to e-mail me and ask me any questions about having a kid on this diet... and don't put anymore money into the Dr.s pockets, you KNOW what's wrong with him now, now get on to the business of getting him better.

e-mail is nisla@comcast.net

Rice Cakes Newbie
Rice Cakes
Posted

Blood tests are not perfect and a doctor's verification may be useful or even necessary for some things. It's only a month and, unless the effects are life-threatening, an endoscopy and biopsy are probably preferable. Everyone in the world doesn't have celiac disease, and really if he has something else it's important to know that.

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

Celiac.com Sponsor (A8-M):


eKatherine Apprentice
eKatherine
Posted

A positive result on a blood test is conclusive. It is only the negatives that are inconclusive.

Guest nini
Guest nini
Posted

no everybody in the world doesn't have celiac, BUT, you do not have to be consuming gluten for testing for any of the OTHER things it could be... why not try the diet and if it helps, you haven't lost anything... and having a Dr.s verification had NOT been useful in my case, in fact it's been a hinderance. I am healthier now that I'm off gluten than I ever was on it, and back then I was considered insurable... now I am considered UNINSURABLE because my chart says CELIAC.

Rice Cakes Newbie
Rice Cakes
Posted
... now I am considered UNINSURABLE because my chart says CELIAC.

Yeah I didn't think about any of that before you mentioned that up above. Yuck. Was it solely celiac disease that disqualified you?

GFBetsy Rookie
GFBetsy
Posted

If you really want to have a biopsy confirmed diagnosis, but don't want to feed your son gluten for the next month, here are my suggestions:

1. Call and get your son on a waiting list for cancelations.

2. Call again 2 or 3 times a day to find out if there have been any cancellations yet.

You will feel obnoxious, and the people in the office will get VERY irritated with you, but (believe me) the first cancellation that comes up they will offer to you, if only to make you STOP CALLING! As long as you don't mind making yourself hated at one doctor's office, you can acheive remarkable results! LOL

Oh, and while you are waiting for the biopsy appointment, you can start looking at dietary options. Since you are pretty sure that you are going to be going gluten-free with him, I would start looking for good websites/books that will help you learn about the lifestyle adjustments celiac calls for. There's lots of information on raising celiac kids, and there are more cookbooks available every day. I'd start out by making a list of all the things your son still WILL be able to eat (bunless burgers, hot dogs, eggs, fruits and veggies, baked potatoes, tacos (stick with homemade, though, lots of Fast Food joints add wheat to their meat), etc.). Check out the cookbook "Saving Dinner" by Leanne Ely. It's not technically a gluten-free cookbook, but most of the recipes are naturally gluten-free, and they are all really good. Then I'd find someone with some gluten-free baking experience to be friends with LOL. It's lots more fun to experiment with a buddy than it is to do it by yourself.

Good luck!

Archived

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

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


  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748
    Becky 0163
    Newest Member
    Becky 0163
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • 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.
×
×
  • 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.