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Emotional Vent

ItchyMeredith

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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

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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?

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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).

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    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

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    • Dizzyma
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      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
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      By xxnonamexx · Posted

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      By Florence Lillian · Posted

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