Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

The more I'm "in," the worse it gets!


Igiveup

Recommended Posts

Mandykins Newbie
On 7/15/2018 at 4:25 PM, Igiveup said:

It seems as though the more I research, and dedicate myself to becoming gluten free(only 6-8 weeks now), the worse my dh is getting! I know I am probably missing some things, but my diet compared to several weeks ago, is hugely improved! I have learned that humility, and always remaining teachable will be one of my best allies in this battle. Just this morning, after making a dreaded assumtion that what I heard earlier about coffee, was not all inclusive, and that I might very well been poisening myself, with about 40 - 60 ounces of instant coffee every morning! Plus relying on a cheap variety(great value) of hazelnut creamer( just because it said gluten free, not certified! ) So off to the store for a new coffee maker, ground Folgers, and...we'll see! I am sorry to be so lengthy, but if I can save anyone, or only one person from dh of this magnitude, I will be at least a happier camper! 

As I stated earlier, it seems my outbreaks have only been getting worse. I (so far) have only experienced dh, but don't know how much more I can tolerate, and find it impossible to believe that I am using "only" and "dermatitis herpediformus" in the same sentence!!! I still have two months to go in a new job, until my insurance kicks in, and in the meantime will have to see a dermatologist, instead of a gastro-intestinal dr. Believe me, I can ill afford to not tell this dr. that I had a preliminary diagnosis via, skin biopsy, that indicated celiac. This is hideous. Please, any ideas????????

Thank you for the posts I've read so far, and hopefully, if anyone is doing the instant coffee thing.... it might be wise to reconsider! 

 

Hi, 

my doctor recommended using psyllium fibre for treating celiac symptoms, and I can say it has saved me many many times from horrible gluten reactions.  I use the capsules which help reduce DH breakouts. 
Ive also stopped eating corn and  anything made from corn. It has made a huge difference in reducing DH breakouts on my skin. I found a corn allergies list (its extensive) which guides  me thru eliminating all things  corn. Time consuming? You bet ! But worth the effort:) 


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



Celiac.com Sponsor (A8-M):



Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,710
    • Most Online (within 30 mins)
      7,748

    GFGaucho
    Newest Member
    GFGaucho
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Just so you'll know, once you have been gluten-free for any length of time, it will invalidate testing for celiac disease.
    • QueenBorg
      Yes. I have not been tested for celiac. It took forever to get diagnosed with Fibromyalgia. lol. I have an appointment with my regular GP later this month and will convey my findings on improved symptoms and see what his thoughts are. Thank you. 
    • knitty kitty
      @Grahamsnaturalworld, It's never too late.   Have you been checked for Small Intestinal Bacterial Overgrowth?  SIBO can cause ongoing symptoms.  Mast Cell Activation Syndrome (MCAS) and Histamine Intolerance (HIT) can also be the cause of ongoing symptoms.  The AIP diet can help with these by starving out SIBO bacteria and calming the immune system. Do you include dairy in your diet?  Casein in dairy can cause an autoimmune response the same as to gluten.  Have you been checked for lactose intolerance?  Some people lose the ability to produce the enzyme, lactase, needed to digest lactose, the sugar in dairy because the villi where the lactase enzyme is made are damaged.  AIP diet excludes dairy. Do you include grains in your diet?  Gluten free alternative grains and ancient grains can be inflammatory and cause symptoms.  Some people with Celiac react to corn and oats.  The AIP diet excludes all grains.  Lectins in grains can be inflammatory and cause symptoms. Do you eat nightshades (tomatoes, potatoes, peppers, and eggplant).  This family of plants produce glycoalkaloids, chemicals that promote Leaky Gut Syndrome.  The AIP diet excludes nightshades.   Are you on any medications?  Some medications can cause gastrointestinal symptoms.  Do you take any supplements?  Some herbal teas and supplements can cause digestive symptoms.  Medications for diabetes, antidepressants, and other pharmaceuticals can cause digestive symptoms as side effects. Have you been checked for nutritional deficiencies?  Malabsorption of essential nutrients can occur with continued symptoms.  Deficiencies in Niacin, Thiamine, and other B vitamins can cause digestive symptoms.  Gastrointestinal Beriberi and Pellagra are often overlooked by doctors because they are not familiar with nutritional deficiency disease symptoms.  Nutritional deficiencies can worsen over time as stores inside the body are depleted.   Have your doctors checked for all these?   I had a horrible time getting my symptoms under control.  I had to answer all these questions myself.  Yes, it's frustrating and exasperating because doctors don't have to live with these symptoms everyday. Interesting reading: AGA Clinical Practice Update on Management of Refractory Celiac Disease: Expert Review https://pubmed.ncbi.nlm.nih.gov/36137844/
    • Grahamsnaturalworld
      Ok, thanks for the advice, the only advice I've had that's made sense after 21years since my slight symptoms all my life turned into nasty symptoms 21 yrs ago and around 50 gp's and specialists all chasing the symptoms and not looking for the cause, after 9 years of misery I discovered my symptoms matched celiac disease and a blood test proved anti bodies to gliadin but it was too late it has changed into r.c.d. thanks again.
    • trents
      Welcome to the forum, @QueenBorg! Just for the sake of clarification, your desire to avoid gluten is connected only with your dx of fibromyalgia and not celiac disease, correct?
×
×
  • Create New...