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Where Did I Go Wrong With This Gluten-Free Chocolate Cake?


Seeking2012

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Seeking2012 Contributor

I did follow most of the instructions from the book but I did change a few things. Instead of coconut oil, I used canola oil. Instead of honey, I used granulated sugar. Instead of baking soda, I used baking powder.

Cake Ingredients:

  • 10 eggs
  • 1 cup organic raw honey
  • 1/4 cup unsweetened cocoa powder
  • 1 tsp salt
  • 1 tablespoon vanilla extract
  • 1 cup coconut oil
  • 3/4 cup coconut flour, sifted
  • 1 tsp baking soda

Once I had everything mixed together, it looked more like caramel so I added more cocoa powder to get it to look more like chocolate or dark chocolate.

The cake came out having a spongy texture (resembling the texture of scrambled eggs). The texture was not that of a soft, familiar and delicate wheat-flour based cake. The flavor also was weird. It tasted less chocolately than I expected. The flavor was not bad but it wasn't good either.

Also, the coconut flour cake seemed like sandpaper as it went down my throat. I remember trying raw coconut flour when it first came in the mail and it went down my throat course and dry. It is similar to cornmeal in this regard.

Is it supposed to be like that?

Gluten-FreeChocolateCakeExperiment10_small.webp

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Happyw5 Explorer

Is that a picture of the cake you made? It looks really good!

I have never baked with coconut flour of coconut oil, because I am allergic, however, I know that it's hard to sub coconut flour with other flours because coconut flour needs more moisture (higher protein-I believe). Maybe switching the oils will do something similar.

Also, if you sub baking powder for baking soda you need to add extra (I am not sure how much)

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Takala Enthusiast

I am sorry, but, I am sort of finding this funny..... the first rule of gluten free baking is that if you do a lot of substitutions, the results come out a bit differently than the original. The second rule is that some recipes on the internet, or even in cookbooks, as given, don't make something edible or have other major flaws. I have a vegetarian cookbook from the 1980's by one of the country's "famous name brand" author's on vegetarianism, and the recipes in it are, frankly, a flunk. :ph34r: I am also reminded of a time a well known food blogger copped another well known food blogger's bread recipe and tried altering it to be vegan, with dismal results, because they didn't get the right amount of dry gluten free flour ingredients and had therefore way too much liquids, and the number of comments under the revised recipe where no one recognized that was causing the problem :rolleyes::wacko: .

Coconut flour is not at all like other flours, because it is extremely low starch, high protein, and it's basically a dry nut meal. It has very little elasticity to it, so one must use either a lot of gum or a lot of egg to hold it together. It also sops up water dramatically, and expands differently than other flours, which then makes it very difficult to dry out enough in the finished product. Hence the recipe above, as written, looks like it is for chocolate flavored scrambled eggs with a lot of added fat. :P And, as you noticed, there really is NOT enough cocoa powder in there to make an entire cake have a chocolate flavor with nearly a carton of eggs used. :blink: The purpose of the honey was to get the coconut to soak up that liquid and do its expansion routine, so the cake would not be as dry.

There are many different types of gluten free flours, starches, and nut meals..... the trick is to find a combination of whatever your body gets along with, and be willing to tinker with using different combinations for different applications.

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love2travel Mentor

In cakes you usually cannot just sub granulated sugar for liquid honey (at least not 1:1). If you do not want to use granulated sugar, I would suggest you use agave syrup instead. That liquid is in there for a reason. That can make a huge change to the texture. Coconut and canola oils are very different and not always interchangeable. They can be, of course, but not in addition to the other changes you made. The coconut oil would have contributed far nicer flavour.

Lastly, baking soda and baking powder are very different as well. You can substitute baking powder in place of baking soda (you'll need more baking powder and it may affect the taste), but you can't use baking soda when a recipe calls for baking powder. Baking soda by itself lacks the acidity to make a cake rise. However, you can make your own baking powder if you have baking soda and cream of tartar. Simply mix two parts cream of tartar with one part baking soda.

All these three changes would make an enormous difference to the cake. So, to answer your question, NO, it is NOT supposed to be like that!!!

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tarnalberry Community Regular

As loves2travel noted, all three of the substitutions you did could individually make big changes in the cake.

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LFitts Apprentice

I understand your substitutions and have a few suggestions. The first is that every recipe that I have tried with coconut flour actually needs much more liquid than the recipe calls for. Like up to a cup more (!!) Maybe it's because of the minimally processed coconut flour that I am using, but it soaks up the liquid and will become VERY dry without a lot extra. After making THOUSANDS (yes thousands) of cakes, I have never had the thought "ooh, that cake is just too moist." So, add extra liquid! Removing the honey probably contributed to the dryness in that regard. I have found that adding sour cream (if you can use the dairy) enhances every cake recipe. If you can't use sour cream, coconut milk is a wonderful enhancement to cake recipes. It adds moisture and fat, so gives it more cakey flavor.

Coconut oil is much different from canola oil. Coconut oil is a solid just below room temperature, so it usually helps to slightly warm it (maybe 75 degrees?) to incorporate it into recipes. Coconut oil is wonderful stuff, so go get some!

The original recipe just isn't right anyway, because 1/4 cup of cocoa powder isn't nearly enough! Next time I would reduce the amount of flour and increase the chocolate to at least 3/4 cup of cocoa. I think that the best cake recipes are the ones where the amount of flour is given in grams. 3/4 of a cup of sifted coconut flour may only be about half a cup of scooped / non-sifted flour. There's a fluffiness factor that's hard to account for in volume measurements, especially for the flours.

One other tip on chocolate cakes -- even if you don't like coffee, adding a small amount of brewed coffee in place of some of the liquid brings out more of the chocolately flavor. People love it and don't know that there's coffee in there.

I'll have to try this recipe out my way and let you know how it works! I'm in the process of converting my kitchen to a gluten-free kitchen and I think I'm going to start only doing gluten-free cakes, but I definitely have a lot to learn.

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Seeking2012 Contributor

Coconut flour is not at all like other flours, because it is extremely low starch, high protein, and it's basically a dry nut meal. It has very little elasticity to it, so one must use either a lot of gum or a lot of egg to hold it together. It also sops up water dramatically, and expands differently than other flours, which then makes it very difficult to dry out enough in the finished product. Hence the recipe above, as written, looks like it is for chocolate flavored scrambled eggs with a lot of added fat. :P And, as you noticed, there really is NOT enough cocoa powder in there to make an entire cake have a chocolate flavor with nearly a carton of eggs used.

Yep; I ended up having to double the amount of cocoa and even then it still didn't taste as chocolatey as I wanted it to. I'll do even more next time.

The purpose of the honey was to get the coconut to soak up that liquid and do its expansion routine, so the cake would not be as dry.

Do you think the sandpaper feeling as it went down my throat was due to the dryness? I assumed it was just how coconut flour was. Sure would be nice to avoid the sandpaper feeling.

In cakes you usually cannot just sub granulated sugar for liquid honey (at least not 1:1). If you do not want to use granulated sugar, I would suggest you use agave syrup instead. That liquid is in there for a reason. That can make a huge change to the texture.

I made a mistake; the original recipe calls for maple syrup, not honey. But would that really make a difference?

After reading all these comments, I'm seeing now that doing a 1:1 sub with sugar for the syrup was a mistake. If I want to use sugar in the place of maple syrup or honey, how much sugar should I use, and what liquid should I add to the recipe to replace the moisture that would have been coming from the honey/maple syrup?

Coconut and canola oils are very different and not always interchangeable. They can be, of course, but not in addition to the other changes you made. The coconut oil would have contributed far nicer flavour.

I'm going to buy coconut oil then.

Lastly, baking soda and baking powder are very different as well. You can substitute baking powder in place of baking soda (you'll need more baking powder and it may affect the taste), but you can't use baking soda when a recipe calls for baking powder. Baking soda by itself lacks the acidity to make a cake rise. However, you can make your own baking powder if you have baking soda and cream of tartar. Simply mix two parts cream of tartar with one part baking soda.

Good to know. For many years now I have refused to use baking soda because the last time I used it, it made the food taste metalic. Is that supposed to happen or did that mean that the baking soda had gone bad or something?

I understand your substitutions and have a few suggestions. The first is that every recipe that I have tried with coconut flour actually needs much more liquid than the recipe calls for. Like up to a cup more (!!) Maybe it's because of the minimally processed coconut flour that I am using, but it soaks up the liquid and will become VERY dry without a lot extra. After making THOUSANDS (yes thousands) of cakes, I have never had the thought "ooh, that cake is just too moist." So, add extra liquid!

I have never had any problems/allergies/reactions with dairy; should I use milk as the liquid?

I have found that adding sour cream (if you can use the dairy) enhances every cake recipe. If you can't use sour cream, coconut milk is a wonderful enhancement to cake recipes. It adds moisture and fat, so gives it more cakey flavor.

Forgive my ignorance...I had always assumed that sour cream would taste sour. I've never eaten it by itself so I don't know.

The original recipe just isn't right anyway, because 1/4 cup of cocoa powder isn't nearly enough!

I could tell that right away; I had double the cocoa powder in the original recipe because it just looked way too light colored and didn't smell nearly chocolately enough.

Next time I would reduce the amount of flour and increase the chocolate to at least 3/4 cup of cocoa.

Definitely. After 3/4 cup, I'll judge by smell.

I'll have to try this recipe out my way and let you know how it works! I'm in the process of converting my kitchen to a gluten-free kitchen and I think I'm going to start only doing gluten-free cakes, but I definitely have a lot to learn.

Great; I hope to hear back from you once you've tried it. I'm going to try this recipe a 2nd time. How about this modified version of the recipe?

3/4+ cup cocoa powder

1/2 cup coconut flour

1.5 tsp baking powder

10 eggs

1 tbsp vanilla extract

1 cup granulated sugar + 1 cup milk to replace the 1 cup of maple syrup (is this right?)

1 cup melted coconut oil

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kareng Grand Master

Yep; I ended up having to double the amount of cocoa and even then it still didn't taste as chocolatey as I wanted it to. I'll do even more next time.

Do you think the sandpaper feeling as it went down my throat was due to the dryness? I assumed it was just how coconut flour was. Sure would be nice to avoid the sandpaper feeling.

I made a mistake; the original recipe calls for maple syrup, not honey. But would that really make a difference?

After reading all these comments, I'm seeing now that doing a 1:1 sub with sugar for the syrup was a mistake. If I want to use sugar in the place of maple syrup or honey, how much sugar should I use, and what liquid should I add to the recipe to replace the moisture that would have been coming from the honey/maple syrup?

I'm going to buy coconut oil then.

Good to know. For many years now I have refused to use baking soda because the last time I used it, it made the food taste metalic. Is that supposed to happen or did that mean that the baking soda had gone bad or something?

I have never had any problems/allergies/reactions with dairy; should I use milk as the liquid?

Forgive my ignorance...I had always assumed that sour cream would taste sour. I've never eaten it by itself so I don't know.

I could tell that right away; I had double the cocoa powder in the original recipe because it just looked way too light colored and didn't smell nearly chocolately enough.

Definitely. After 3/4 cup, I'll judge by smell.

Great; I hope to hear back from you once you've tried it. I'm going to try this recipe a 2nd time. How about this modified version of the recipe?

3/4+ cup cocoa powder

1/2 cup coconut flour

1.5 tsp baking powder

10 eggs

1 tbsp vanilla extract

1 cup granulated sugar + 1 cup milk to replace the 1 cup of maple syrup (is this right?)

1 cup melted coconut oil

I haven't even read all this yet, but, you win The Best Use Of MultiQuote Award! Open Original Shared Link

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Seeking2012 Contributor

I haven't even read all this yet, but, you win The Best Use Of MultiQuote Award! Open Original Shared Link

You know what's funny? I had to edit my post 5 times because it told me I had exceeded the multiquote limit :D:P:rolleyes:

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kareng Grand Master

You know what's funny? I had to edit my post 5 times because it told me I had exceeded the multiquote limit :D:P:rolleyes:

Too funny!

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JNBunnie1 Community Regular

Couple of things about this recipe- I have never seen a coconut flour recipe call

for that many eggs in relation to that much coconut flour. Also, it's telling you to

use honey/maple syrup for a reason. If you are absolutely insistent on using

regular sugar, I would make a simple syrup with it first, thereby turning your sugar

into a liquid sweetener.

General rule of thumb with new recipes- do it exactly the way it says, then play

with substitutions.

Also, try looking up a few different websites (Tropical Traditions has a lot of user-

submitted recipes on their site) for coconut flour recipes and compare them. If

you find three chocolate cake recipes that look similar and one that's very different,

chances are the very different one might not be so good.

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love2travel Mentor

If I were you, I would go for an entirely different recipe. No point in trying to force this one to work when there are thousands of wonderful gluten free cake recipes out there! I do have one sort of similar that calls for eight eggs. It is a very dense truffle cake, not light and fluffy, as it contains very little flour. Just amazing!

BTW, if you do not sift baking soda well, it can taste metallic. It is necessary in many recipes, especially those with an acid such as lemon juice or sour cream. It is often used in combination with baking powder.

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Takala Enthusiast

I use baking soda with cider vinegar, or rarely, lemon juice instead of baking powder, I think the vinegar helps with the type of dense gluten free grains in the quick breads I'm making. I also use a dash of cumin and a dash of gluten-free Chinese 5 spice to cut the baking soda taste.

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Seeking2012 Contributor

If I were you, I would go for an entirely different recipe.

So I did go and find another recipe and made a cake with it, and I'm not going to post all the details today (I'll come back and post a lot more information tomorrow), but I will say this: I am in pain right now from the amount of caffeine I unknowingly exposed myself to today by using a lot more cocoa powder. This new recipe I used called for 1 cup of cocoa powder.

Literally within 1 minute of getting through half of the slice of cake the pain started. 1 cup of cocoa powder has 192mg of caffeine--more than a cup of coffee. My slice was 1/8th of the cake, and I couldn't even finish that much. This means that I consumed (including 1/8th of the icing), 36mg of caffeine. This is about the same amount found in a can of pepsi.

My body has always been sensitive to caffeine. Years ago when I used to drink sodas, I would get headaches and neck/back pain from the caffeine in them. It's 2 hours later and I'm still experiencing pain (headache, back pain, neck pain) from the effects of the 36mg of caffeine I ate in that cake.

I am extremely puzzled. I used to eat slices of chocolate cake from the cake mixes you get at the store and I'd never have this effect. Why is that? Are they really using less cocoa powder in their chocolate cake mixes that I'm using in mine? And if so, how do they get the strong chocolate flavor then?

Ugh...

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love2travel Mentor

So I did go and find another recipe and made a cake with it, and I'm not going to post all the details today (I'll come back and post a lot more information tomorrow), but I will say this: I am in pain right now from the amount of caffeine I unknowingly exposed myself to today by using a lot more cocoa powder. This new recipe I used called for 1 cup of cocoa powder.

Literally within 1 minute of getting through half of the slice of cake the pain started. 1 cup of cocoa powder has 192mg of caffeine--more than a cup of coffee. My slice was 1/8th of the cake, and I couldn't even finish that much. This means that I consumed (including 1/8th of the icing), 36mg of caffeine. This is about the same amount found in a can of pepsi.

My body has always been sensitive to caffeine. Years ago when I used to drink sodas, I would get headaches and neck/back pain from the caffeine in them. It's 2 hours later and I'm still experiencing pain (headache, back pain, neck pain) from the effects of the 36mg of caffeine I ate in that cake.

I am extremely puzzled. I used to eat slices of chocolate cake from the cake mixes you get at the store and I'd never have this effect. Why is that? Are they really using less cocoa powder in their chocolate cake mixes that I'm using in mine? And if so, how do they get the strong chocolate flavor then?

Ugh...

Oh, that's awful. Sorry you are so sick. :( I did have one can of cocoa on my shelf that contained wheat. Out it went. Do you have this type of reaction with baking chocolate with a high cacao content? I'm assuming so as it contains caffeine, too. I don't bake with mixes so am unfamiliar with their contents but perhaps some contain chocolate flavouring or extracts. Mixes are inexpensive so I would assume the chocolate they use is highly processed and not necessarily the real thing.

Feel better soon!

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Seeking2012 Contributor

If I were you, I would go for an entirely different recipe.

Either I'm a total dummy when it comes to gluten-free baking, or gluten-free cooking from scratch is quite a complex task. Here is the recipe I used this time:

  • 1 cup butter - softened
  • 1 2/3 cups sugar
  • 10 eggs (at room temperature)
  • ½ teaspoon vanilla extract
  • 2 cups coconut flour
  • 1 cup unsweetened cocoa powder
  • 1 ½ teaspoon baking soda
  • ½ teaspoon baking powder
  • 1 teaspoon salt
  • 1 1/3 cup milk or half n half
  • Coconut oil

Here's the icing recipe I used:

  • 1/2 cup cocoa powder
  • 2 cups powdered sugar
  • 1/4 cup butter
  • 1/3 cup milk
  • 1/2 tsp vanilla extract

I substituted canola oil in place of the coconut oil, as I do not yet have coconut oil. Everything else I did exactly as the instructions say. The good news is that the cake came out moist, velvety and had a deep chocolate color. The texture was very good. The flavor was also more chocolatey this time compared to the other cake I had attempted in the OP.

Here's how a slice cut from the cake looked (each slice is 1/8th of the cake):

GF-CHOCOLATE-CAKE-ATTEMPT214_small.webp

But here's the bad part. This cake put me through a lot of pain. Literally. I was a huge dummy and didn't realize until after I had eaten half a slice of this cake that it has so much caffeine in it from the cocoa powder. I am extremely sensitive to caffeine. I don't drink sodas (haven't for years), and I don't drink coffee either (never have). The caffeine gave me a headache, pain in my neck, shoulders, back and arms. it also made me dizzy. Repeated exposure (I had another half slice yesterday because I didn't learn my lesson the first time) will cause more symptoms, such as hardened stools followed by diarrhea. The caffeine upper body pain lasts for many hours and continues into the following day, though at a lesser degree.

In case you think I may have mistakenly been glutened, nope, that is not the case. The coconut flour has one ingredient: coconut flour. The cocoa powder also has one ingredient: cocoa powder. Also, I am unaware of any gluten sensitivities that I may or may not have; for example, I can eat a wheat flour burger bun or a wheat flour dinner roll and experience no trouble whatsoever. I am on this forum learning about celiac and gluten-free cooking because my sister has celiac and therefore I'm genetically predisposed to get it too.

Anyway, this leaves me with many questions:

1. Did I overdo it on the cocoa powder (I did experience some mild pain from the other recipe in which I used 1/2c though)?

2. How do the conventional wheat flour-based chocolate cake mixes at the store, which include cocoa powder, get that full, rich chocolately flavor without the painful effects of the caffeine? Are they decaffeinating their cocoa powder? I've eaten many a cake-mix and don't remember ever experiencing caffeine pain from them.

3. Why can I eat a 60% cocoa Ghirardelli bar (yes, the whole bar) and not experience any side effects from the caffeine? Are they also removing the caffeine?

4. Is there some sort of cooking/processing technique that renders the caffeine ineffective?

Comparison of this gluten-free cake to a wheat-flour based chocolate cake mix at the store:

- A wheat-flour based chocolate cake mix always comes out light and fluffy, and goes down the throat smoothly. The cake will be somewhat filling.

- This gluten-free chocolate cake came out more dense and was extremely filling. I mean EXTREMELY filling, to the point where I can't finish a whole slice. Also, the cake will still feel a little "rough" when going down the throat.

- This gluten-free cake doesn't hold together very well; it crumbled apart during the process of taking it out of the pan, applying icing, and cutting it. Note that all these tasks were performed after the cake had thoroughly cooled in the fridge.

I don't get it. Maybe someone out there knows the answer.

I am so sad; I am going to have to throw out all the remaining 7 slices of this cake. I am on the verge of giving up on gluten-free cakes. But what bothers me the most is that I haven't yet found the answer. I wanted to be able to make my own recipes from home because this gives me more control over what I am eating, but then my own cooking ends up hurting me? I am devastated. :(

Edited to add this: I just got off the phone with Now Foods (the company I bought the cocoa powder from) and they said that their product is the ogranic, non-alkalinized "real" thing, and that it may just be too much for my digestive system to handle. This is what their product page says: "each serving of NOW® non-alkalinized Organic Cocoa Powder naturally contains 21.5 - 107.5 mg of cocoa flavanols (polyphenol)"

Maybe it's not just the caffeine; maybe it's the theobromine, polyphenols and flavanols that's doing it to me...

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Takala Enthusiast

Maybe go to a different flavor of coconut flour cake, such as.... coconut ? add coconut extract and flaked coconut, plus the vanilla, and then just use chocolate icing ? Maybe try a different brand of cocoa powder? Or carob powder icing ? Or use mashed banana in the cake batter ?

Don't give up, everybody has made something they thought was pretty good and then ..... the reaction. :ph34r: Then you feed the leftovers to somebody else. :lol:

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JNBunnie1 Community Regular

You could also try making a cake with a different set of flours. There are gluten free

cake mixes out there. You can also bake from scratch gluten free with rice flour,

sorghum flour, all kinds of flours. This will result in a cake more like what you're

used to. It's entirely possible you're just intolerant to coconut......

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Seeking2012 Contributor

Maybe go to a different flavor of coconut flour cake, such as.... coconut ? add coconut extract and flaked coconut, plus the vanilla, and then just use chocolate icing ? Maybe try a different brand of cocoa powder? Or carob powder icing ? Or use mashed banana in the cake batter ?

Don't give up, everybody has made something they thought was pretty good and then ..... the reaction. :ph34r: Then you feed the leftovers to somebody else. :lol:

I am going to try another brand of cocoa powder or go with carob instead. And I've become very pessimistic about coconut flour in general because it is so extremely finicky. I tried making muffins with it the other day and they turned out a soggy mess. Not to mention the taste was absolutely horrible; could not get it down. And the smell was equally bad.

You could also try making a cake with a different set of flours. There are gluten free

cake mixes out there. You can also bake from scratch gluten free with rice flour,

sorghum flour, all kinds of flours. This will result in a cake more like what you're

used to. It's entirely possible you're just intolerant to coconut......

Perhaps, but the starchy flours are too high on the glycemic index for me. I need something lower in carbs. Gonna try almond flour next time.

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JNBunnie1 Community Regular

I am going to try another brand of cocoa powder or go with carob instead. And I've become very pessimistic about coconut flour in general because it is so extremely finicky. I tried making muffins with it the other day and they turned out a soggy mess. Not to mention the taste was absolutely horrible; could not get it down. And the smell was equally bad.

Perhaps, but the starchy flours are too high on the glycemic index for me. I need something lower in carbs. Gonna try almond flour next time.

Ahhhh, I see. In that case coconut flour and almond flour are good choices. Also, try looking

up recipes made with almond butter, very easy and it usually turns out amazing. Very good

brownie recipe using almond butter on Elana's pantry website.

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JNBunnie1 Community Regular

Also, do not replace liquid sweeteners in gluten free recipes with granulated

sugar- sometimes it will work, most of the time it will not. Keep in mind that batters

are not going to behave the way you're used to, and you can't use the look/

consistency of the batter as a gauge the way you used to do either.

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    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
      I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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