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

Shouldn't We Be Better By Now?


Gluten Free Girls

Recommended Posts

Gluten Free Girls Apprentice

My 6 year old, 12 year old and I were all diagnosed with Celiac disease at the end of June. We will be meeting with our doctor at the end of this week to see if our numbers have dropped at all. I am scared to death that we will go to this visit and find out that we aren't doing things correctly. My girls immune systems seem to be worse rather than better and my youngest still has the extremely dried and cracked lips as well as thinning hair. I think I'm desparate for a sign that we're headed in the right direction. My girls and I have never suffered any gastrointestinal symptoms so we haven't been able to use this as a measurement. Any insights? I know that in general it could take a year to repair our intestines, but I need some sign that we're heading in the right direction.


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



Celiac.com Sponsor (A8-M):



Booghead Contributor

Well all I know is that: Perhaps your daughter has thinning hair and dry skin(cracked lips) from a thyroid problem. Which is very commonly associated with gluten intolerance. The good news is that you don't have any gastrointestinal symptoms because they are awful.

I will give you the general rundown of things a lot of people don't know have gluten in them or gluten on them. (Because you are new I don't know how much you know).

Toasters-gluten lives in toasters you may need a new one.

Pills, Medications, and Supplements-very commonly have wheat in them. Benefiber has gluten in it.

Lotions, Shampoos, and Conditioners- All 3 of mine had "hydrogenized wheat product" which is gluten. Made me itchy all the time.

Any food fried in a fryer that has breaded food fried in it has gluten contamination.

Thats the things I think people look over quite frequently, maybe more info and we can help you!

Jenny (AZ via TX) Enthusiast

Booghead has a lot of good advice. It may also be because the damage to all of your intestines was severe. It took me longer than 6 months to feel good again so it really just depends on the person. Unfortunately, there is only so much you can do as the body simply needs time to heal. Continue to be diligent in not letting gluten sneak in and hopefully you will all feel better soon! Hang in there. It really does get better.

rosetapper23 Explorer

It sounds as though you might all be suffering from vitamin, mineral, and/or hormonal deficiencies. Your daughter with the thinning hair and dry lips should be checked for all deficiencies, especially B12, zinc, and manganese. If she hasn't been checked for diabetes, this should also be done since celiacs share a gene with diabetics. Doctors should alwayscheck each disease when a child presents with one of them.

As for doing things "right," it takes time to discover all the ways that we can get cc'd. Your daughters would especially be at risk because they probably visit friends and attend school. All you can do is your best....and, over time, your health should improve.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,019
    • Most Online (within 30 mins)
      7,748

    Wilson1984
    Newest Member
    Wilson1984
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.