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

Of All The Things I Miss The Most......

Serielda

By Serielda
in Coping with Celiac Disease

Recommended Posts

Serielda Enthusiast
Serielda
Posted

Ok so my first year of dealing with things has been a roller coaster straight from the land of chaos. Granted things have gotten better, yet there are things I am still struggling with.  As many of you here who  are familiar with me knows I was take off a vegan diet much to my dismay and it lead to a long pity party, at which no time did I cheat. I do not believe in cheating in that I to try  not harm anything around me including myself, this lead to several months of being upset that I had to eat meat as my Dr.'s did not want me consuming any grains or dairy.  The dairy thing was not a problem as I did not consume dairy products for several reasons, but upon shifting to paleo, I  did not do the 21 day sugar detox, after close inventory i felt I did not consume a lot of sugar to begin with, but perception is a mother. 

 

So anyway I was talking with a good friend of mine who is a tattoo artist who is not comfortable performing a tattoo for me right now due to some break outs on my skin. My  dermatologist has determined it as Dh.  After a refusal on my end to use Open Original Shared Link topically I was  asked to refrain from sugar and caffeine and I admit I am not  quite the good girl with that as I feel I have given up  way way way to much already. Giving up gluten no problem, ask me to eat meat and I get a bit angry but begrudgingly do so. So to not disappoint a friend of mine who asked me to do the tattoo for a tat conference I am giving up the sugar so her canvas won't be a huge disappointment and also it may do me some good.  My problem is I now have a screaming headache and I  need to study for  work. In 2 months I am switching departments and I need to study my butt off so I do well in my new area. I had during the time of my pity party shot thru 7 months of good learning time because I was not happy  with Paleo.

 So some may ask why I have  such a grudge against Paleo. Here it is, I have friends who tout they eat paleo( note the friends are not celiacs at all)  but when going out will eat a gluten free dish while ingesting Jack Daniels or  drink beer. As a celiac I get angry at this because their flighty actions I feel  ruin and discredit things for us who are ill and need to be gluten free so i tend to want to lump paleo as a  trendy moron thing, when its furthest from the truth. While there are  trendy dieters, there are those of us who are on Paleo because it does help celiac's.  

I want to move past this and thrive and kick butt in my new position but with the headache and things I feel mopey and I am losing time with studying. So how does anyone else here when abstaining from certain foods and things deal with withdraw? The good news is since I have cut out  the sugar and caffeine  the dh is showing some improvement.

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Have you read the DH section? You might find it helpful. I am not knowledgable about DH, but I recall that food high in iodine trigger the DH rash. I have not read that sugar impacts it.

I have not had withdrawal symptoms (never gave up coffee) so I can not help you there. Hang in there. It is hard dealing with celiac!

Hugs!

Serielda Enthusiast
Serielda
Posted
  • Author

That is what I thought, but I'm only trying this by recommendation of my dermatologists. But I will nose through that section.

Thanks

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. Wends
      - Wends replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      30

      Blood results

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also...
    2. Bennyboy1998
      - Bennyboy1998 replied to Ben98's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Potential celiac need advice

      Yes gene HLADQ2 was positive
    3. Wends
      - Wends replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Inconclusive results

      Wow, the system is crazy isn’t it? Maybe switch Doctors if you can. It’s surprising from what you’ve written it seems obvious it’s celiac disease. The “potential” diagnosis means celiac is developing and it basically just hasn’t done enough gut damage to be captured on the biopsy yet, and meet that “criteria” to satisfy the current system! Given the overwh...
    4. cristiana
      - cristiana replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      63

      How Come Gluten Didnt Bother Me In Italy

      @Gigi2025 Thank you for your interesting post. Some of what you say chimes with something my gastroenterologist tells me - that he has clients who travel to France and find the same as you - they will eat normal wheat baguette there without issue, for example. His theory was he thought it might be to do with the locally sourced wheat being different...
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Inconclusive results

      Thank you both very much. I’m pretty familiar with the various tests, and my older two girls with official dxs have even participated in research on other tests as well. I just felt overwhelmed and shocked that these recent results (which I found pretty dang conclusive after having scott clean labs just six months ago) would still be considered inconclusive. ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,700
    • Most Online (within 30 mins)
      7,748
    RelievedP
    Newest Member
    RelievedP
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
    • Bennyboy1998
      Potential celiac need advice

      By Bennyboy1998 · Posted

      Yes gene HLADQ2 was positive 
    • Wends
      Inconclusive results

      By Wends · Posted

      Wow, the system is crazy isn’t it? Maybe switch Doctors if you can. It’s surprising from what you’ve written it seems obvious it’s celiac disease. The “potential” diagnosis means celiac is developing and it basically just hasn’t done enough gut damage to be captured on the biopsy yet, and meet that “criteria” to satisfy the current system! Given the overwhelming evidence already - family history, positive ttg and ema. And your own experience and intuition which counts far more. And the labs being reproduced after gluten elimination and reintroduction- elimination and reintroduction diet is the gold standard too. Shame on the Doc and the system. What was the Marsh score? I’m guessing not 0 if it’s potential celiac. Meaning the autoimmune process has been triggered and started. Your daughter is obviously very healthy and her immune system is putting up a good fight. It can take years for the gut damage to build to a point where there’s overt symptoms and then a conclusive diagnosis, hence why many celiacs receive diagnosis later in life. You can prevent it. See the positive and the gift in that. Hopefully the gluten challenge confirms it, but if it doesn’t maybe get a second opinion?
    • cristiana
      How Come Gluten Didnt Bother Me In Italy

      By cristiana · Posted

      @Gigi2025  Thank you for your interesting post.  Some of what you say chimes with something my gastroenterologist tells me - that he has clients who travel to France and find the same as you  - they will eat normal wheat baguette there without issue, for example.  His theory was he thought it might be to do with the locally sourced wheat being different to our own in the UK? But I have to say my own experience has been quite different. I have been to France twice since my diagnosis, and have been quite ill due to what was then (pre-2019)  poor labelling and cross-contamination issues.  My TTG test following my last visit was elevated - 'proof of the pudding', as we say in the UK!  It was not just a case of eating something like, say, shellfish, that disagreed with me - gluten was clearly an issue. I've also been to Italy to visit family a couple of times since my diagnosis.  I did not want to take any chances so kept to my gluten free diet, but whilst there what I did notice is that coeliacs are very well catered for in Italy, and many brands with the same ingredients in the UK are clearly marked on the front of their packaging that they are 'senza glutine'.  In the UK, you would have to find that information in the small print - or it puts people off buying it, so I am told!  So it seems to me the Italians are very coeliac aware - in fact, all children are, I believe, screened for coeliac disease at the age of 6.  That must mean, I guess, that many Italian coeliacs are actively avoiding gluten because, presumably, if they don't, they will fall ill?        
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you both very much. I’m pretty familiar with the various tests, and my older two girls with official dxs have even participated in research on other tests as well. I just felt overwhelmed and shocked that these recent results (which I found pretty dang conclusive after having scott clean labs just six months ago) would still be considered inconclusive. Doc said we could biopsy in another six weeks because my daughter was actually way more upset than I anticipated about the idea of eating it for years before doing another biopsy. It doesn’t hurt her, but she’s afraid of how it may be hurting her in ways she can’t feel. She’s currently eating mini wheats for breakfast, a sandwich with lunch, and a side of pasta along with every dinner, so I’m hoping we’re meeting that 10g benchmark mentioned in that second article!
×
×
  • 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.