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

Emotional Vent

ItchyMeredith

Recommended Posts

ItchyMeredith Contributor
ItchyMeredith
Posted

I feel like I am one of the lucky ones because I got my diagnosis only 2 years after the symptoms started. I also feel lucky that my biggest issue (I think) is this rash. I am so happy to have caught celiac disease before I became truly and dangerously ill like so many of you have.

It is amazing that I even got the diagnosis

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

Celiac.com Sponsor (A8-M):


Creative-Soul Newbie
Creative-Soul
Posted

Feel free to vent away! You are indeed very fortunate to have found the root cause of your issues so "soon" (two years)! Thank goodness that your baby is fine and that you finally did go to see that second dermatologist; your previous one was totally irresponsible, to say the least...

tarnalberry Community Regular
tarnalberry
Posted

I would encourage you to call your first doctor on her negligence. (You may want to avoid that word, as it has legal connotations, however.) Doctors need feedback as well, good and bad.

kbtoyssni Contributor
kbtoyssni
Posted

Ummm, yeah, that sounds like negligence to me, too. It's one thing for a doctor to not know enough about the disease to think about it and be able to diagnose based on non-standard symptoms and a negative "gold-standard" biopsy, but it's quite another to have a diagnosis written in your records and not tell you. It is unacceptable for a doctor to not tell you if you have a disease.

emorgan1985 Rookie
emorgan1985
Posted

How frustrating! I've had some issues with doctors concerning Celiac also...my primary care doctor just kept shoving acid blockers down my throat, not really doing anything to find out what was wrong. When those failed he sent me to a GI doctor. The worst GI doc EVER to be exact. He sat me on the table, poked my tummy with a finger, asked if I was pregnant, then said "There's nothing wrong with you." and sent me home. So I FINALLY got with a good GI doc and that man is a miracle! :D But anywho...that was my rant and I know how it feels to be SO FRUSTRATED with your doctors!

Erin from Arizona

debmidge Rising Star
debmidge
Posted

Meredith:

My husband went thru 3 gastros and no less than 5 Internists/GP's before gastro #4 diagnosed the disease. This took 27 years of adult-onset illness. One GASTRO told him he needed psychological help because the illness was all in his mind. This was in 1994. The years were grueling emotionally and the illness has racked and destroyed his body, not to mention what it's done to him mentally.

The word "diagnose" is interesting. It's root word is "gnosis" in Greek meaning "knowledge." "Dia" is greek meaning "through, between". The word means to get the knowledge by taking the facts through or between the symptoms and information. May we all have doctors who truly know the meaning of this word.

I cheer for those who get diagnosed quickly go gluten-free and retain their health.

To your health - Deb

kjk Newbie
kjk
Posted
I would encourage you to call your first doctor on her negligence. (You may want to avoid that word, as it has legal connotations, however.) Doctors need feedback as well, good and bad.

Hi, I'm new to the forum. My Chinese herbalist recently suggested that this could be my problem (dh). I was really interested in how you signed off about "chocolate". I am just discovering "hidden gluten". Does chocolate have hidden gluten?

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted
Hi, I'm new to the forum. My Chinese herbalist recently suggested that this could be my problem (dh). I was really interested in how you signed off about "chocolate". I am just discovering "hidden gluten". Does chocolate have hidden gluten?

Hi!

Ah... Chocolate. :)

I should clarify that my sig's talking about pure chocolate, not chocolate in things like Milky Way and Reeses Peanut Butter Cups. Other people can tell you about those; I'm a snob for the good, pure chocolate. ;)

Technically, the answer to your question, in my experience, is no - it's not hidden. But you have to read the label, because it can be on there. Most good, solid chocolate does not contain gluten at all. There are a couple of noteable exceptions, such as Green & Black's Mint Dark Chocolate and Caramel Dark Chocolate contain glucose syrup derived from wheat. I've seen one or two that list malt on them, which would mean they were right out, but don't recall the names. Those cases are all well marked on the label, however, so it's not hidden, you just have to read the ingredients.

The sig actually comes from discussions we've had over what soy-free chocolates are available. A number of people on the board are also soy-intolerant, to the degree that they avoid soy lecithin as well.* But soy lecithin is a very commonly used emulsifier in chocolate, so it can be very difficult to find truely so free chocolate. Due to a recurring "Chocolate Thursday" event at work (we taste a new fancy chocolate every week at work; oh life is rough :) ), which had me search out oodles of chocolate, I found a number of soy-free ones, including: Domori, Cluizel, Castelain, Bonnat, Theo, and Vivani. (I've had all of them but the Vivani, so far, in at least two varieties. I've ranked them in order of my preference, but I like strong chocolate.)

There was general discussion over what was good chocolate, too. ;)

*(I should note that many people who find that they cannot tolerate soy, even if it's due to an allergy, can tolerate soy lecithin, but many cannot. So I don't want to imply that if you think you need to avoid soy, you automatically have to avoid lecithin as well. It's something to determine, but I wouldn't call it automatic.)

wildlife-lover Newbie
wildlife-lover
Posted
I feel like I am one of the lucky ones because I got my diagnosis only 2 years after the symptoms started. I also feel lucky that my biggest issue (I think) is this rash. I am so happy to have caught celiac disease before I became truly and dangerously ill like so many of you have.

It is amazing that I even got the diagnosis

kbtoyssni Contributor
kbtoyssni
Posted
Hi, I'm new to the forum. My Chinese herbalist recently suggested that this could be my problem (dh). I was really interested in how you signed off about "chocolate". I am just discovering "hidden gluten". Does chocolate have hidden gluten?

Most chocolate is ok. Again, just read the labels, but there's plenty out there that you can have: Snickers, M&Ms, Mounds, Almond Joy, Dove, Andes Mints, Milky Way DARK (note: Milky Ways made with milk chocolate is NOT gluten-free).

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,918
    • Most Online (within 30 mins)
      7,748
    Dizzyma
    Newest Member
    Dizzyma
    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

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
×
×
  • 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.