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.

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

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748

    Klairep
    Newest Member
    Klairep
    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
      Welcome to the forum @Known1, What reaction were you expecting? Pipingrock.com High Potency Vitamin D3, 2000 IU, 250 Quick Release Softgels $6.89 I've have been taking the 10,000 IU for close to 10 years. When I started with vitamin D I worked my way up to 10000 over several weeks.  Even at 8000 I felt no noticeable difference.  Then after a few days at 10000 it hit Whoa, sunshine in a bottle.  celiac disease causes malabsorption of dietary D and you've poor UV access.  It took me from 2015 to 2019 to get my 25(OH)D just to 47 ng/ml.  Another two years to get to 80.  70 to 100 ng/ml seems to be the body's natural upper homeostasis  based on lifeguard studies.  Dr. Holick has observed the average lifeguard population usually has a vitamin D 3 level of around 100 ng/ml. Could it be that our normal range is too low given the fact that ¾ or more of the American population is vitamin D deficient? Your Calcium will increase with the vitamin D so don't supplement calcium unless you really need it.  Monitor with PTH  and 25(OH)D tests. Because of your Marsh 3 damage you need to ingest way more than the RDA of any supplement to undo your specific deficiencies. I believe you are in the goiter belt.  Unless you have reason not to, I recommend pipingrock's Liquid Iodine for price and quality.  The RDA is 150 to 1100 mcg.  In Japan the safe upper level is set at 3000 mcg.  Start with one drop 50 mcg to test for adverse response and build up.  I found 600 mcg (12 drops) a day is helping repair my body.  Iodine is necessary to healing.  90% of daily iodine intake is excreted in urine.  A Urine Iodine Concentration (UIC) can tell how much Iodine you got that day.  The thyroid TSH test will not show iodine deficiency unless it is really bad.  
    • xxnonamexx
      I don't know if I am getting sufficient Omega Threes. I read about  phosphotidyl choline may cause heart issues. I will have o do further research on heathy Omega 3 supplements or from foods. Is there a blood test that can tell you everything level in your system such as Thiamine, Benfotiamine levels etc? Thanks
    • catnapt
      If lectins were my problem, I would react to wheat germ (the highest source of wheat lectins) and beans. I don't. I only react to bread and pasta, which are the highest sources of gluten. Therefore, my issue is wheat-specific (Gluten/ATIs), not a general lectin issue.   I have eaten a supposedly high lectin diet (I say supposedly because lectin content in these foods is greatly reduced by proper cooking and I eat very few of those foods raw, and even then, rarely!!) for years. My health has improved greatly on my whole foods plant forward diet. I have asked all my drs and a registered dietician about my diet, asked if eating such a high amnt of fiber might interfere with the digestion of any other nutrients and the answer has always been NO.     while doing the gluten challenge I did not eat ANY wheat germ (since it doesn't have hardly any gluten, and I was too sick from the bread and pasta to want to eat much anyway) I will NOT put that poison in my body again. That was a horrific experience and if this is what most celiac patients have to deal with, I am very sorry for them I don't care if I have celiac or NCGS I won't intentionally cause myself that much pain and suffering it's not worth it.  
    • knitty kitty
      @catnapt,  Wheat germ contains high amounts of lectins which are really hard to digest and can be irritating to the digestive tract.  They can stimulate IgG antibody production as your blood test shows.   Even beans have lectins.  You've simply eaten too many lectins and irritated your digestive tract.   You may want to allow your digestive tract to rest for a week, then start on gluten in "normal" food, not in concentrated vital wheat gluten. This explains it well: Lectins, agglutinins, and their roles in autoimmune reactivities https://pubmed.ncbi.nlm.nih.gov/25599185/
    • knitty kitty
      I take Now B-1 (100 mg) Thiamine Hydrochloride, and Amazing Formulas L-Tryptophan (1000 mg).   Both are gluten free and free of other allergens.  I've taken them for a long time and haven't had a problem with them. I take Vitamin A from BioTech called "A-25".  It's gluten and allergen free and made in the USA.  It's a powder form of Vitamin A.  I was having trouble digesting fats at one point, but found I tolerated the powder form much better and have stuck with it since.   Tryptophan and Vitamin A help heal the intestines as well as improves skin health.  I get Dermatitis Herpetiformis and eczema flairs when my stomach is upset.  So I'm healing the outside as well as the inside.   I take one 1000 mg Tryptophan before bedtime.   With the Thiamine HCl, take 100 mg to start.  If you don't notice anything, three hours later take another. You can keep increasing your dose in this manner until you do notice improvement.  Remember not to take it in the evening so it won't keep you too energized to sleep. When I first started Thiamine HCl, taking 500 mg to 1000 mg to start was recommended.  If you've been thiamine insufficient for a while, you do notice a big difference.  It's like the start of a NASCAR race: Zoom, Zoom, turn it up!   This scared or made some people uncomfortable, but it's just your body beginning to function properly, like putting new spark plugs in your engine.  I took 1000 mg all at once without food.  It kicked in beautifully, but I got a tummy ache, so take with food.  I added in Thiamine TTFD and Benfotiamine weeks later and felt like I was Formula One racing.  So cool.  You may feel worse for a couple days as your body adjusts to having sufficient thiamine.  Feels sort of like you haven't cranked your engine for a while and it backfires and sputters, but it will settle down and start purring soon enough.  Adjust your dose to what feels right for you, increasing your dose as long as you feel improvement.  You can reach a plateau, so stay there for several days, then try bumping it up again.  If no more improvements happen, you can stay at the plateau amount and experiment with increasing your Thiamine TTFD.  It's like being your own lab rat.  LoL Yes, take one Benfotiamine at breakfast and one at lunch.  Take the B Complex at breakfast. Take the TTFD at breakfast and lunch as well.  I like to take the vitamins at the beginning of meals and the NeuroMag at the end of meals.   You may want to add in some zinc.  I take Thorne Zinc 30 mg at breakfast at the beginning of the meal.   Are you getting sufficient Omega Threes?  Our brains are made up mostly of fat.  Flaxseed oil supplements, sunflower seed oil supplements (or eat the seeds themselves) can improve that.  Cooking with extra virgin olive oil, avocado oil, or coconut oil is also helpful.   @Wheatwacked likes phosphotidyl choline supplements for his Omega Threes.  He's also had dramatic health improvement by supplementing thiamine.  You're doing great!  Thank you for sharing your journey with us.  This path will smooth out.  Keep going!  
×
×
  • 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.