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

It Is Offical!


Nikki'smom

Recommended Posts

Nikki'smom Apprentice

Well my DD had her scope yesterday and the dr said he didn't see any serious signs of Celiac but he could tell her villi was swollen so he has no doubt about the diagnosis. Which I knew alreadybut it was kind of nice to hear it. Almost a relief you know?

This was the 1st time I meet this dr because we saw another dr in his practice that was new to the practice but she didn't have rights at the hopital our insurance took so he had to do the scope. Well I LOVED this dr! He said all tehrright things and didn't talk down to us said everything I wanted to hear and researched he should do! I was thrilled. He said they would take 6-8 samples and if it came back negative eh would send it to another lab because he couldn't see with her blood test results it coming back negative. Turns out he took 10 samples in her intestine and 4 or 6 in her bowel! I should have the oficail results today. He did say go on the gluten free diet starting today and if I had any probolems with her school to just give him a call and he would send a letter! He also told me that he is in the procces of opening a office in my town soif I have to go to him I could just go there and/or if my ped wants to run the labs they are friends so he can certianly run them and keep each other posted! Needless to day i am switching to this guy!

So today is putting together a letter for her school and planing on stopping by talking to the proper people there as well as making up a letter for her soccer team about snacks.

This may sound funny but now that we know it is almost a relief i feel very blessed we were diagnosed in a few short weeks instead of the yrs I have heard it can take.

Thanks again for every ones help I am sure I will have many more questions as our gluten-free journey begins :D


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



Celiac.com Sponsor (A8-M):



EBsMom Apprentice

I'm glad you have some answers! Good luck getting started with the diet. We're in month 4 and it's starting to seem like second nature now! :-)

Rho

Griffin's Mama Newbie

Congrats on finding out ! I know that must be a huge relief to know what is wrong. i truly hope that things get easier for you . Good Luck!

ShayBraMom Apprentice

I'm so sorry to hear about the Diagnosis but I'm also very happy for you that you finally know! Now you guys cabn concentrate on avoiding what feed the "enemy". Years ago I knew something wasn't right with my son but I couldn't put the finger on it!For two years I fought to have an EEG getting done. When it was finallly done it did turn out that I was right, he did have some form of Seizuredisorder. I still remember the feeling I had, I was so relieved to find that I wasn't imagining this and also to know that now we could get him better, but also kind of sad at the same time, knowing that in fact they did find somethig which meant to me that my boy wans't all ok- so weird to feel all of the opposites.

Big hugs and congrats, as you know it takes in average a lot of people 10 yrsa. to get diagnosed since Celiac has so many faces!

Well my DD had her scope yesterday and the dr said he didn't see any serious signs of Celiac but he could tell her villi was swollen so he has no doubt about the diagnosis. Which I knew alreadybut it was kind of nice to hear it. Almost a relief you know?

This was the 1st time I meet this dr because we saw another dr in his practice that was new to the practice but she didn't have rights at the hopital our insurance took so he had to do the scope. Well I LOVED this dr! He said all tehrright things and didn't talk down to us said everything I wanted to hear and researched he should do! I was thrilled. He said they would take 6-8 samples and if it came back negative eh would send it to another lab because he couldn't see with her blood test results it coming back negative. Turns out he took 10 samples in her intestine and 4 or 6 in her bowel! I should have the oficail results today. He did say go on the gluten free diet starting today and if I had any probolems with her school to just give him a call and he would send a letter! He also told me that he is in the procces of opening a office in my town soif I have to go to him I could just go there and/or if my ped wants to run the labs they are friends so he can certianly run them and keep each other posted! Needless to day i am switching to this guy!

So today is putting together a letter for her school and planing on stopping by talking to the proper people there as well as making up a letter for her soccer team about snacks.

This may sound funny but now that we know it is almost a relief i feel very blessed we were diagnosed in a few short weeks instead of the yrs I have heard it can take.

Thanks again for every ones help I am sure I will have many more questions as our gluten-free journey begins :D

mftnchn Explorer

Good news to confirm what the issue is so you know how to address it. The doc sounds great, seems like he needs to be cloned all across the country!!

Nikki'smom Apprentice

Thanks every one!

The dr called with the 'ofical offical ' results and the biopsy came back as we knew it would. Thakfully I prepared myself and the rest of my family including my dd so yesterday was pretty good for a start!

ShayBraMon, I turely believe in a mother's intuition! Mom (and dad's ;) have it there is no doubt!

I went to her school yesterday but the whole staff was in meetings. The secratery was there so I left my letter and lists for the nurse with her. She said the nurse should call me back today. I figured if I don't hear from her by 10am or so I will give her a call. I really want this all settled before school starts on Tuesday. I want to make sure every one is on board. I know her teacher was great about the possibility so now that is it a fact i want to work out a game plan so to speak with her.

My head is spinning already between school starting and both kids in soccer, my 5 year old son in karate, and Nikki in tumble/cheer. Then add the fact that both kids are in different schools (the kindergarten is in a seperate school), then add to it learning all of the Celiac stuff I feel like I am going miss something important like pick up a kid form an activity! LOL

So please bare with me if I have some silly stupid questions!

mother2gf3 Newbie

hey I know the relief you are feeling, to know what the problem is . I have 4 children 3 with celiac confirmed with blood and biopsy, my 6 year old was diagnosed the end of may, my 4 year old in june and my 2 year old in august so we are new to this also. My son the 6 year old was so sick for so long he was vomiting daily, he was extremly underweight, pale, lack of energy and a huge distended belly, he went thru so many tests and drs appointments, when we found out the biggest weight lifted off my shoulders because, even though its a huge lifestyle change, I now know what we are fighting. My son has gained almost 10 pounds and has grown a whole inch since finding out, It seems like I have a whole new happier, healthier kid now. What a change. good luck to ya.


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



Celiac.com Sponsor (A8-M):



Nikki'smom Apprentice

Yes I would Love to be able to clon my dr! I wish I could!

mother2gf3, OMG your poor little one! I am thrilled to hear he is doing so much better though that is wonderful!

IT just breaks my heart knowing all these little ones are hurting! I am VERY bnlessed that my dd is so asymptomatic. Yes she does get tummy aches and is tiny (48lbs at 7)but for the most part she is active into sports and always on the go and never let this stop her. i am anticipating some issues once she is gluten-free for a few months because I am sure by accident she will get glutened and i am expecting it to be worse becaue she never showed the pain before. Hopefully I am very wrong though!

buffettbride Enthusiast

It's kind of odd to congratulate you, but it is so nice to have a diagnosis--especially when so little damage had been done and you know just what to do to keep it from progressing.

Soon it will become second nature to do the gluten-free thing and even with a largely asymptomatic child, you might even notice some changes for the better.

Good luck!

Archived

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

  • 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 replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

    2. - 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?

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

      Supplements for those Diagnosed with Celiac Disease

    4. - 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.

    5. - 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?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748

    Amy Immerman
    Newest Member
    Amy Immerman
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Wheatwacked
      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
      @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
      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
      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
      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.