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

Need Information Quickly Please!

Noni

By Noni
in Coping with Celiac Disease

Recommended Posts

Noni Rookie
Noni
Posted

To all the wonderful people I've met on this awesome site!

Since joining, you've all been so supportive and helpful to me that I'm coming to you today for help again. Here's the situation:

I have a 4 y/o niece who has suffered with stomach issues since birth. These problems have become severe. We took her to a large children's hospital this week where they ran blood work on her, an a stool specimen. The specialist just contacted my sister to inform her that the blood work was extrememly abnormal; says it shows Celiac Disease.

However, he still wants my niece to have an endoscope. The doctor claims the blood test is without doubt. I have no clue about how the accuracy of the blood test. We don't see why she should have to endure this invasive procedure. She's been traumatized enough.

Another main question for you: How can I send a link to my sister so that she can join this website to get help on the "Gluten-free Diet". I don't know how to do that. Would someone please respond quickly so that she can be helped also? Thank you in advance.

Noni

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

Here is the link to the main forum page:

https://www.celiac.com/gluten-free/

Skylark Collaborator
Skylark
Posted

There is also great information on the main site. Send her to https://www.celiac.com/. Right in the middle of the front page, there is a series of links on the gluten-free diet.

As for the endoscopy, your sister needs to find out whether the doctor will positively diagnose celiac disease without it. Your niece will likely need doctors notes for school, especially if her celiac is severe enough to have positive bloodwork that young. If she was positive on anti-endomysial IgA or anti-deamidated gliadin peptide, she is almost certainly celiac as those two tests are about 98% accurate. Some doctors still want the "gold standard" of a positive biopsy, and they also want to get an idea of how bad the damage actually is. Bloodwork and villous damage are not very well correlated. If the result was anti-TTG (tissue-transglutaminase) she does need the endoscopy to rule out other problems because that test is less specific. Also, endoscopy isn't just for celiac. Your sister can talk to the GI doctor and see if he has a suspicion of any other GI problems and his clinical experience is suggesting he should have a look.

Celiac is genetic, so your sister and her husband need to be tested.

Noni Rookie
Noni
Posted
  • Author

Here is the link to the main forum page:

https://www.celiac.com/gluten-free/

'

Thank you so very much!!!! I appreciate it more than you

could know. She will be so happy. Noni :D

Noni Rookie
Noni
Posted
  • Author

There is also great information on the main site. Send her to https://www.celiac.com/. Right in the middle of the front page, there is a series of links on the gluten-free diet.

As for the endoscopy, your sister needs to find out whether the doctor will positively diagnose celiac disease without it. Your niece will likely need doctors notes for school, especially if her celiac is severe enough to have positive bloodwork that young. If she was positive on anti-endomysial IgA or anti-deamidated gliadin peptide, she is almost certainly celiac as those two tests are about 98% accurate. Some doctors still want the "gold standard" of a positive biopsy, and they also want to get an idea of how bad the damage actually is. Bloodwork and villous damage are not very well correlated. If the result was anti-TTG (tissue-transglutaminase) she does need the endoscopy to rule out other problems because that test is less specific. Also, endoscopy isn't just for celiac. Your sister can talk to the GI doctor and see if he has a suspicion of any other GI problems and his clinical experience is suggesting he should have a look.

Celiac is genetic, so your sister and her husband need to be tested.

Thank you so much! I have Celiac Disease myself. Could Hannah (my niece), have got it from me? I also have Crohn's Disease. My feelings about the endoscope are that the doctor only wants to do it because he is a "Gerd" specialist. The blood test he ran was the 2 you named. He stated they were extremely high results. His words were: very abnormal for a child her age. My concern with getting the diagnosis in writing without the endoscope is great, as he has a strange personality. When we took her in, she had been vomiting for 10 days straight.....he did nothing, offered no remedy. She also has had either loose green stool or diarehha. I wasn't impressed with him. Hannah cries daily that her belly hurts.

I've tried for a while to get my sister to start her on a gluten-free diet, as Hannah has Asperger's Syndrom. It took the trauma of the ER visit and the doctors visit w/ blood work to get her attention, sad! I'm Hannah's support system right now. Thanks for writing, please keep in touch. Noni

curiousgirl Contributor
curiousgirl
Posted

Thank you so much! I have Celiac Disease myself. Could Hannah (my niece), have got it from me? I also have Crohn's Disease. My feelings about the endoscope are that the doctor only wants to do it because he is a "Gerd" specialist. The blood test he ran was the 2 you named. He stated they were extremely high results. His words were: very abnormal for a child her age. My concern with getting the diagnosis in writing without the endoscope is great, as he has a strange personality. When we took her in, she had been vomiting for 10 days straight.....he did nothing, offered no remedy. She also has had either loose green stool or diarehha. I wasn't impressed with him. Hannah cries daily that her belly hurts.

I've tried for a while to get my sister to start her on a gluten-free diet, as Hannah has Asperger's Syndrom. It took the trauma of the ER visit and the doctors visit w/ blood work to get her attention, sad! I'm Hannah's support system right now. Thanks for writing, please keep in touch. Noni

Hopefully, Mom will take the same interest as Auntie! (learn how to pronounce those big words and what they mean)

cassP Contributor
cassP
Posted

Thank you so much! I have Celiac Disease myself. Could Hannah (my niece), have got it from me? I also have Crohn's Disease.

your neice didnt get it from you- but she recieved genes from your sister.. and possibly her father too. the genes are obviously in your family- and your sister is either a celiac too- or just carrying one or more genes.

i have celiac, i got 2 DQ8s- one from BOTH my mom & dad. im trying to get them tested. MY AUNT on my mom's side was just diagnosed with Crohns.. i wrote her a LENGTHLY letter explaining the genetics- and that her GI should test her for Celiac- and she never replied :(

i hope your neice gets on the diet, and i hope her parents get tested too. good luck :)

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

Thank you so much! I have Celiac Disease myself. Could Hannah (my niece), have got it from me? I also have Crohn's Disease. My feelings about the endoscope are that the doctor only wants to do it because he is a "Gerd" specialist. The blood test he ran was the 2 you named. He stated they were extremely high results. His words were: very abnormal for a child her age. My concern with getting the diagnosis in writing without the endoscope is great, as he has a strange personality. When we took her in, she had been vomiting for 10 days straight.....he did nothing, offered no remedy. She also has had either loose green stool or diarehha. I wasn't impressed with him. Hannah cries daily that her belly hurts.

I've tried for a while to get my sister to start her on a gluten-free diet, as Hannah has Asperger's Syndrom. It took the trauma of the ER visit and the doctors visit w/ blood work to get her attention, sad! I'm Hannah's support system right now. Thanks for writing, please keep in touch. Noni

Hannah couldn't have gotten the celiac gene from you because she is not your child. It means your sister is probably also carrying the genes and needs to be tested. Your parents should be tested as well.

Hannah almost certainly has celiac if both those tests were high. If your sister doesn't want Hannah to have the endoscopy, she needs to talk to the doctor about getting a diagnosis without it for school. Also, gluten free might help her Asperger's and your sister should consider casein-free as well. A lot of autistic kids do better off both.

  • 2 weeks later...
Noni Rookie
Noni
Posted
  • Author

Hannah couldn't have gotten the celiac gene from you because she is not your child. It means your sister is probably also carrying the genes and needs to be tested. Your parents should be tested as well.

Hannah almost certainly has celiac if both those tests were high. If your sister doesn't want Hannah to have the endoscopy, she needs to talk to the doctor about getting a diagnosis without it for school. Also, gluten free might help her Asperger's and your sister should consider casein-free as well. A lot of autistic kids do better off both.

Thanks so much for all the advice. I truly appreciate it. Will definately find a way to pass the info on.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    4. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.