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

Sent Susie's Test Kit Back To Enterolab Today


Ursa Major

Recommended Posts

Ursa Major Collaborator

Well, I finally got Susie to give her 'samples', and sent the package to Enterolab by FedEx today. She has been too sick for school at least twice a week for the longest time. If she goes to school at all, she is usually late, because she is so fatigued and dizzy in the mornings, that she is so slow getting ready, that even two hours are usually not enough.

Today she was sick again with tonsillitis (which has become chronic). She failed all of her classes last semester, and is not doing well in this one, either. It is very frustrating. And she is one of the smartest kids I know.

She refuses to try the gluten-free diet without 'proof' that she needs to be on it. She had a blood test done a year ago which came back negative (one number a high negative), which gives her the excuse to not even try the gluten-free diet, claiming she is fine. Obviously, she isn't fine at all.

So, needing to know what is wrong with her, I hope that the tests will come back positive. Because then I'll know what to do to make her well again. She was such a healthy kid when little!

The situation here at home has gone to where she needs to get away from her dad, as he drives her out of her mind (me too, but that's another story). So, she is going to move to live with her older sister's family for the new term in February. She lives a four and a half hour drive away with her husband and two little kids (Susie is holding the younger one in my avatar).

Since they eat mostly Gluten-free Casein-free (and the older child strictly so), it would work well diet wise, too.

Anyway, I'll post the test results when I get them.


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



Celiac.com Sponsor (A8-M):



ShayBraMom Apprentice

Hi, my name is Susi (just like your dd's) and I'm german like you. Mu dd's samples has been gone to EnteroLab aobut two weeks ago, I"m hoping to latest by the end of the weekend to get the results for my daughter, I had ordered a Malnutrition Stooltest on her! I hope you get the results you need to hel your dd, can't wait to hear more!\

Nig hugs, and you guys hang in there!

Well, I finally got Susie to give her 'samples', and sent the package to Enterolab by FedEx today. She has been too sick for school at least twice a week for the longest time. If she goes to school at all, she is usually late, because she is so fatigued and dizzy in the mornings, that she is so slow getting ready, that even two hours are usually not enough.

Today she was sick again with tonsillitis (which has become chronic). She failed all of her classes last semester, and is not doing well in this one, either. It is very frustrating. And she is one of the smartest kids I know.

She refuses to try the gluten-free diet without 'proof' that she needs to be on it. She had a blood test done a year ago which came back negative (one number a high negative), which gives her the excuse to not even try the gluten-free diet, claiming she is fine. Obviously, she isn't fine at all.

So, needing to know what is wrong with her, I hope that the tests will come back positive. Because then I'll know what to do to make her well again. She was such a healthy kid when little!

The situation here at home has gone to where she needs to get away from her dad, as he drives her out of her mind (me too, but that's another story). So, she is going to move to live with her older sister's family for the new term in February. She lives a four and a half hour drive away with her husband and two little kids (Susie is holding the younger one in my avatar).

Since they eat mostly Gluten-free Casein-free (and the older child strictly so), it would work well diet wise, too.

Anyway, I'll post the test results when I get them.

AndreaB Contributor

Ursa,

I hope you get the results you need. With most of the family doing better gluten free, I would be surprised if she didn't come back with elevated numbers.

I'm glad to hear she'll be able to move in with her older sister. Hopefully that will help her too since she won't be able to get much gluten if she still refuses the diet.

I'll be waiting for you to post her results when you get them.

thepeach80 Rookie

I'm new here, but very interested in the entero labs tests so I'll be interested to hear what they find. I'll be doing a search of stories here from people who have used it. Hope it makes things better for her.

Jennifer

Virgie Apprentice

Hi! I'm fairly new to this board so forgive me if I ask questions that you have already told the answers to.

My son has ulcerative colitis and he too feels very fatigued in the morning and has dizzy smells also. Has your daughter been scoped to check for that? My son too has missed many days of school. He is now a Senior but when he was a freshman & sophomore he missed around 80 days each year. And many days he did go in only for half days. And unfortunately this year is not all that great for attendance either. He failed a couple of his subjects but made them up last year. It was a very tough year with lots of homework but he got through it. He has an IEP so that does help. Does Susie have an IEP or a 504 plan? That would help her out alot if she did.

Hope you get the answers you need and that she starts to feel better soon.

Take care :) !

Virginia

son 18 UC/EE & IBS, daughter 13 Celiac

Well, I finally got Susie to give her 'samples', and sent the package to Enterolab by FedEx today. She has been too sick for school at least twice a week for the longest time. If she goes to school at all, she is usually late, because she is so fatigued and dizzy in the mornings, that she is so slow getting ready, that even two hours are usually not enough.

Today she was sick again with tonsillitis (which has become chronic). She failed all of her classes last semester, and is not doing well in this one, either. It is very frustrating. And she is one of the smartest kids I know.

She refuses to try the gluten-free diet without 'proof' that she needs to be on it. She had a blood test done a year ago which came back negative (one number a high negative), which gives her the excuse to not even try the gluten-free diet, claiming she is fine. Obviously, she isn't fine at all.

So, needing to know what is wrong with her, I hope that the tests will come back positive. Because then I'll know what to do to make her well again. She was such a healthy kid when little!

The situation here at home has gone to where she needs to get away from her dad, as he drives her out of her mind (me too, but that's another story). So, she is going to move to live with her older sister's family for the new term in February. She lives a four and a half hour drive away with her husband and two little kids (Susie is holding the younger one in my avatar).

Since they eat mostly Gluten-free Casein-free (and the older child strictly so), it would work well diet wise, too.

Anyway, I'll post the test results when I get them.

jerseyangel Proficient

I'll be waiting to hear the results, Ursa :)

I also wouldn't be surprised if she comes back positive. If so, her new living arrangement sounds ideal. I'm sure it will be hard for you to have her go, though.

Ursa Major Collaborator
Hi! I'm fairly new to this board so forgive me if I ask questions that you have already told the answers to.

My son has ulcerative colitis and he too feels very fatigued in the morning and has dizzy smells also. Has your daughter been scoped to check for that? My son too has missed many days of school. He is now a Senior but when he was a freshman & sophomore he missed around 80 days each year. And many days he did go in only for half days. And unfortunately this year is not all that great for attendance either. He failed a couple of his subjects but made them up last year. It was a very tough year with lots of homework but he got through it. He has an IEP so that does help. Does Susie have an IEP or a 504 plan? That would help her out alot if she did.

Hope you get the answers you need and that she starts to feel better soon.

Take care :) !

Virginia

son 18 UC/EE & IBS, daughter 13 Celiac

Virginia, do you know that a gluten-free diet is VERY helpful to people suffering from ulcerative colitis? It could help your son tremendously to also be on a gluten-free diet.

I know that Susie could have other problems. But she is the worst one for any kind of testing, as she faints even when having some blood drawn. I am glad she finally gave her stool sample and did the cheek swab, after having the kit for a month, with new excuses for not doing it all that time. Because she doesn't want to know if she has celiac disease, as she doesn't want to give up bread.

If the tests come back negative, I will certainly keep looking, as I just need to figure out what is wrong with her.

Thanks Susi, Andrea, Jennifer and Patti for your encouraging words. I got the e-mail confirmation from FedEx of the box arriving at Enterolab today. Now all I can do is wait. I'll let you know what the results are when I get them.


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



Celiac.com Sponsor (A8-M):



thepeach80 Rookie

As someone who doesn't have to be gluten-free but I try to eat w/ Evan from time to time when it's something we'll both eat, I've found some great gluten-free bread mixes out there. I actually like them! :huh: It's hard to be gluten-free obviously, but I'm finding more and more subs for Evan. His new fave is Kinnickinick chocolate covered donuts.

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. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      Related issues

    2. - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

    3. - knitty kitty replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

    4. - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,246
    • Most Online (within 30 mins)
      7,748

    IRENEG6
    Newest Member
    IRENEG6
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Mari
      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • knitty kitty
      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      This article may be helpful:  
×
×
  • 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.