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

Can Someone Please Help?!

concerned-mom061

Recommended Posts

TCA Contributor
TCA
Posted
Well, is a scope really the only way to tell? Is there not some other non-invasive way? I'll do anything in this world to help her, but I hate to put her through all that if there is something else we can do. I understand that you are not telling me to do it, and that you're not a big fan of it....I'm just asking if there is another way.

Trust me, I investigated EVERYTHING and there is no other way to know if EE/EG is her problem. I would be a proponent of making sure ALL gluten is eliminated and if she doesn't improve then doing the scope. To fix the problem you would probably be put on Neocate only and go through allergy testing. The scope can tell if it is EE/EG, but it can't determine what is causing it. It could be any food or even an inhaled allergy. Allergy testing is the only way to determine what the culprit is. The bad news is that allergy testing is often unreliable in young kids. From what I understand with the RAST testing (blood) is that if you get a negative there is a 90% chance that it is actually negative, but if you get a positive there is only a 50/50 chance that it is actually positive. I'm not sure of the skin prick statistics. We went ahead with the scope while megan was on all food BUT gluten. I'm not willing to do a trial of that because we know it does terrible things to her. If you're going to do a scope I would beg to get her in ASAP so that you can get her tested before the foods are out of her system.

  • 3 weeks later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 53
  • Created
  • Last Reply
AndreaB Contributor
AndreaB
Posted

I just though I'd update everyone a little.

I emailed Bree about Kylie and she was kind enough to respond quickly.

She's been very busy so just in case she doesn't get on here in the next week.....

Kylie has her surgery on the 14th for her ear tubes.

If everyone can keep her in their thoughts and prayers, I'm sure it would be appreciated. :)

Her rash had gotten a little better but flared back up again. Bree will have to do a more thorough update when she has a moment.

Just wanted to get this out there.

concerned-mom061 Rookie
concerned-mom061
Posted
  • Author

Thanks a bunch Andrea!! You guys are great!

As I told Andrea...sorry I haven't posted in a while. I've been really busy w/Kylie and my little brothers, they are 12, and I am raising them. Kylie somehow caught the hand, foot, and mouth disease, and I have never seen her so miserable. She's been running a high fever, and wouldn't take anything by mouth. The only thing that kept her out of the hospital was me begging her doctor not to put her in and the fact that she has a feeding tube. So, we just put everything through her tube until she felt better. She has dropped more weight, but she's been sick, so we're pretty sure that's why. Also, she goes for her pre-op visit today, and they put tubes in next week, as Andrea has already stated. Her rash did improve w/the cream Andrea sent.......thanks so much, Andrea......and w/the complete removal of all gluten, wheat, eggs, milk, and soy. That pretty much cut everything out....but I did find some food from glutenfreemall.com that is from a company called, Enjoy Life Foods. She still will not eat much, though. I also took everyon'e advice, and I stopped giving her the little dried fruit and everything else that was suggested. Her diarrhea has imorived, but she still has several diapers a day. Some days are better than others. We are still waiting for the results from bloodwork they did last week to see if her immune system responded to the treatment that was started. Everyone please pray about that.....for if it hasn't she will have to continue getting an injection of antibodies for every week for many years to come. However, her reflux seems to have worsened. She gags and chokes a lot, and has even stopped breathing a couple of times. We are working on a mixture of new meds to fix that.

All in all, I have seen a dramatic improvement in her....she sleeps better, her rash looks better than it ever has, she is happier, and her stools have improved. I thank all of you so much for everything!! It was everyone's advice and guidance that has gotten us to where we are, and I even told her pediatrician that. She told me that she agreed, for no one knows what it is like and how to deal w/it all except for a mother who has been there. She advised me to continue to stay involved w/all of you and heed to the advice that is given....while keeping her involved, of course. So thank you again, and please continue to pray. If I can do anything for any of you, please just ask!!

God Bless you all!

key Contributor
key
Posted

I didn't read all of this, but the first page. I am SO sorry for all you have gone through with your little girl! I know when I was going through the worst with my son it made ME physically ill.

Have you tried goat's milk?? I don't know if that would help at all or if she would even drink it, but it sounds like she is in a desperate situation. It sounds like she does need a different formula without any soy or milk.

I am not an expert whatsoever and I hope you find the answers.

Have you tried aquaphor for her bottom?

I would also persue genetic testing. I saw something on discovery health about a little girl that had some rare metabolic disorder and she couldn't have any protein. I am sure this is very unlikely, but I would be finding a specialist somewhere to rule EVERYTHING out. Has she seen a Genetisist?

Take care and I will keep your little one in my prayers!

Monica

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. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed. Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    2. knitty kitty
      - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

      Hello, @Jordan Carlson, So glad you're feeling better. Tecta is a proton pump inhibitor. PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12. Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the...
    3. knitty kitty
      - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1. There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine. In Thiamine deficiency, the body...
    4. Scott Adams
      0

      Inmate with Celiac Disease Wins $630,000 After Jail Denies Gluten-Free Food

    5. trents
      - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,020
    • Most Online (within 30 mins)
      7,748
    Ericaa
    Newest Member
    Ericaa
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Fruits & Veggies

      By knitty kitty · Posted

      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      Positive biopsy

      By knitty kitty · Posted

      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Positive biopsy

      By trents · Posted

      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
      Positive biopsy

      By pothosqueen · Posted

      26F!
×
×
  • 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.