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Emotional Vent


ItchyMeredith

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ItchyMeredith Contributor

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

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

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

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

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

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
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
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
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
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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    • Scott Adams
      Thank you for sharing your perspective. It's true that many grains contain proteins that are technically classified as "glutens" (like zein in corn and orzenin in rice), but it's important to clarify that these proteins are not the same as the gluten found in wheat, barley, and rye, which contains gliadin and glutenin. These specific proteins are the ones that trigger an autoimmune response in people with celiac disease. For individuals with celiac disease, the primary concern is avoiding gluten from wheat, barley, and rye, as these are the grains scientifically proven to cause damage to the small intestine. While some people with celiac disease or non-celiac gluten sensitivity may also react to other grains, this is not universal and varies from person to person. For most people with celiac disease, grains like corn and rice are considered safe and are widely recommended as part of a gluten-free diet. That said, you raise an important point about systemic inflammation and individual tolerance. Some people may indeed have sensitivities to other grains or find that eliminating additional grains helps them feel better. However, it’s crucial to differentiate between celiac disease, which requires strict avoidance of wheat, barley, and rye, and other conditions or sensitivities that may involve broader dietary restrictions.
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      I disagree, Lori. Gluten is a particular protein, not a category of proteins. It is found in wheat, barley and rye. Other cereal grains have proteins that resemble gluten to one degree or another but are not gluten. Gluten is gluten. Avenin is avenin. But yes, it is true, that informally speaking, some have used the term "gluten" to refer to the proteins found in these other cereal grains. It's like the term "kleenex" has come to refer to all facial tissues.
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      In fact ALL grains contain different forms of gluten that go by different names. Corn contains Zein and Rice contains Orzenin. We all need to realize that a very small amount of any of these grains can cause continued systemic inflammation which is not optimal for allowing the body to heal itself.  
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      Search “deamidated gliadin Abs, IgG is 26.6/abnormal high” online for articles on your exact question above, and I’m sure this forum has an expert in explaining your test results as well. 
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