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Specific Carbohydrate Diet (SCD)


AliB

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ArtGirl Enthusiast
The one thing I am still very frustrated by is the mucous level in my throat. ...Does anyone else have this problem?

Yes. Lots of mucous in my throat and immediately after eating coconut yogurt from my first batch, which was started by using a 1/4 cup cow's milk yogurt to about 1 quart of coconut milk. This happened every time I ate the yogurt. Since I am casein intolerant my conclusion is that there was too much casein in it and I reacted. I quit eating the yogurt and the phlem cleared up.

Today, about 3 days from last eating the yogurt, I tried about 2 tablespoons from my second batch, which was started by using 1/2 cup of the first batch of coconut yogurt. This greatly reduced the amount of casein in the whole thing (about 1 quart) and theoretically allowed more breakdown of the casein. There was no reaction.

I am still cautious about this, and as soon as my probiotics come in the mail that have no dairy in them I will use these to make a culture. I'm amost positive that the phlem problem was the casein and not the probiotics themselves, or even the coconut milk which I have consumed in the past without problems. But I will make one more experiment and have the coconut milk alone and see if I react to it.


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AliB Enthusiast
The K is for Kathryn. Thanks everyone for all the help so far. I called in sick to work today, I'm having a lot of pain and stomach distention, worse than I did before going gluten free! Eating anything at all hurts, so I may either not eat, or try some carrot soup later on.

I'm using a thermos for the yogurt this time, after fiddling with the oven I decided the thermos may be the better way to go. I hope it works out.

I found this on Open Original Shared Link - a website on making your own yogurt.

"No need to worry about spoilage if you watch the timing. The lactic acid that causes fermentation attacks the perishable protein in milk. The longer it sits souring, the more lactic acid is produced. It can rest at 100 degrees F. for a good 8 to 10 hours with no danger. However, beyond that time limit, mold becomes a distinct possibility. Mold will feed on that protective lactic acid rendering the yogurt defenseless."

Does Elaine talk about this in the book? (I won't get my book until next week) Anyone had any issues with this?

Thanks.

If the milk has been heated to a high enough level to kill any stray rogue bacteria I fail to see where the mold would come from, unless it was stored without a lid or the container was dirty! Personally I have never had any problem with mold.

AliB Enthusiast
Mmmm...yum - that sounds really good! I will give it a try. I actually have some fresh ginger at home that I bought last night. Just need the sparkling water. :lol: Thanks for posting the recipe!

The one thing I am still very frustrated by is the mucous level in my throat. It is thick, often hard to clear - almost always present. Today maybe it is a slight bit less than it was on Monday - but I don't understand why it is here at all at this point. The level of mucous decreased several weeks ago after I dropped dairy, corn and eggs. I guess I thought it would just disappear when I dropped almost everything else from my diet!! Eating anything sets it off. It is generally worse for about 30 minutes to an hour after eating ANYTHING.

Does anyone else have this problem? I am hopeful it will ultimately disappear - because honestly, it makes me want to blow my head off I am so sick and tired of it!!! :angry::ph34r: If I don't clear my throat, it is uncomfortable and ends up covering my vocal cords. It gets aggravating beyond belief for myself and others around me if I do try to clear it (because a quiet, soft gentle approach does not work).

I have had allergy testing. Mixed results from 2 different doctors (yeah, big surprise there, right?!). One said there were some minimal allergies, but I can't afford to use the allergy drops. The other said no allergies, did some intradermal testing, said negative, sent blood off to the lab to test - all clear. Assuming it has to do with food since eating is guaranteed to start the junk flowing.

I still get it from time to time after eating certain things although I don't know what it is that is triggering it, but generally it is better. I hoped it would go after dropping dairy but it didn't seem to make an awful lot of difference, but I've stayed off most dairy anyway as it seems to give me C. Ironic really as my problem was D for years.

Hopefully, as your body starts to off load all the accumulated junk and toxins it will improve - just don't expect it to happen overnight though!

DMarie Apprentice
Yes. Lots of mucous in my throat and immediately after eating coconut yogurt from my first batch, which was started by using a 1/4 cup cow's milk yogurt to about 1 quart of coconut milk. This happened every time I ate the yogurt. Since I am casein intolerant my conclusion is that there was too much casein in it and I reacted. I quit eating the yogurt and the phlem cleared up.

Today, about 3 days from last eating the yogurt, I tried about 2 tablespoons from my second batch, which was started by using 1/2 cup of the first batch of coconut yogurt. This greatly reduced the amount of casein in the whole thing (about 1 quart) and theoretically allowed more breakdown of the casein. There was no reaction.

This was why I dropped dairy almost a month ago - figured it was part of the problem. And I did notice improvement from what it was before. BUT - there is still too much. And it doesn't matter what I eat. All I have to do is swallow water wrong (so that I end up coughing) - and that sets it off.

I have tried some of my yogurt, and I seem to be okay eating no more than about 1/2 cup per day. I don't notice the mucous worse than before trying the yogurt. It happens all day long, no matter what I eat, sometimes the junk starts draining and I haven't eaten anything.

I am not a happy camper with this. Sure wish it would stop. :angry:

AliB Enthusiast
Okay, this is fascinating to me. I am actually treating for Adrenal Fatigue right now. I am hopeful that the change in my diet will eliminate various problems and ultimately let me wean off the medication I am on. The medication gave me my life back (Cortef) - but - would really like it is this were not a lifetime thing.

The adrenals will be working overtime as the body fights the inflammation going on in the gut. I had sore adrenals for a long time - they still are a bit but nothing as bad as they were. The fact that they are still a bit sore suggests to me that I still have inflammation going on down there and still have a way to go before it is fully healed (the few ongoing intolerances - and the heart pounding/throbbing thing - tell me that too!).

AliB Enthusiast
This was why I dropped dairy almost a month ago - figured it was part of the problem. And I did notice improvement from what it was before. BUT - there is still too much. And it doesn't matter what I eat. All I have to do is swallow water wrong (so that I end up coughing) - and that sets it off.

I have tried some of my yogurt, and I seem to be okay eating no more than about 1/2 cup per day. I don't notice the mucous worse than before trying the yogurt. It happens all day long, no matter what I eat, sometimes the junk starts draining and I haven't eaten anything.

I am not a happy camper with this. Sure wish it would stop. :angry:

Do you have problems with Candida or other yeasts? I have, for years, and I am convinced that it has a lot to do with the problem. Even on the diet it can take a while to get it under control, but I think that as we do, the mucous production will slow down.

Mucous is the body's way of trying to protect itself from something. Maybe even just eating and drinking can set the little beggars off with their toxin production and the immune system then has to go into overdrive in order to protect itself.

Interestingly I often have had to do a lot of throat clearing (and spitting!) in the morning. As my mouth is usually like a sewage pit by the time I wake up, it shows that the little beggars have been breeding prolifically in my mouth and throat overnight. Again, my body has had to go into mucous production overnight to protect itself from further inflammation - hence the build-up in the morning.

Unless I get a cold, when the same thing happens as the immune system attempts to protect itself from the virus, it is better these days and improving all the time although I still occasionally eat something that will trigger it.

What about trying different single foods at a time to see if you can pinpoint what is doing it? I seemed to get it quite bad after having all natural bouillon powder in with my dinner - it seemed ok when I read the ingredients, but something was triggering it. I couldn't cope with chicken soup initially - I suspect something was boiling out of the carcase that was affecting me, but I'm ok with that now.

It is such a lottery half the time, we don't know what they have done to our food, even the so-called 'pure' stuff................

DMarie Apprentice
Do you have problems with Candida or other yeasts? I have, for years, and I am convinced that it has a lot to do with the problem. Even on the diet it can take a while to get it under control, but I think that as we do, the mucous production will slow down.

What about trying different single foods at a time to see if you can pinpoint what is doing it? I seemed to get it quite bad after having all natural bouillon powder in with my dinner - it seemed ok when I read the ingredients, but something was triggering it. I couldn't cope with chicken soup initially - I suspect something was boiling out of the carcase that was affecting me, but I'm ok with that now.

It is such a lottery half the time, we don't know what they have done to our food, even the so-called 'pure' stuff................

Once upon a time, years ago, I went on a candida diet for a year (plus a ton of supplements). Never sure if that was the problem - but this was back when this all started. Actually, I am sure "all of this" started way before then - but that was when I first started having the brain fog and other issues that made me sit up and take notice. Interestingly enough, this happened after it was discoverd that I was hypothyroid. My theory is that starting on thyroid medication upset the tenuous "unbalance" my body was in. I don't think I could do a candida diet again (shoot me now).

Right now I am not eating a lot of different foods. For the first 2 days, the chicken soup, egg on day 1, broiled chicken patties, cooked carrots. Today I have had cooked apple and a banana, as well as some of my yogurt (interestingly enough, the mucous seems a little slowed after lunch - I had a beef patty seasoned with fresh garlic and salt, topped with a small amount of yogurt cheese, then I had 1 apple sliced up and cooked with a small amount of honey/cinnamon/nutmeg, topped with about 1/2 cup of yogurt).

I have been drinking water and also diluted grape juice.

So there are not so many things in my diet right now. I will be holding steady at Stage 1 for a few days before deciding when to add 1 food item at a time (my plan is to add slowly so I can tell if there is a problem).

Maybe it is just one of those things that will take a while to clear up.

Something else I did today is I stopped taking my Nexium. I have GERD and actually had surgery a few years ago to repair a very large hiatal hernia and to fix the GERD (procedure called a nissen fundoplication - they wrapped the top of my stomach around the lower part of my esophagus to stop it since medication alone wasn't fixing it).

I should not have needed any medication after the surgery, but if I didn't take 2 nexium capsules a day, then I would start getting pain in my upper chest. However, I also had a stomach function test done years before that which indicated things move slower than a snails pace through my digestive tract. So, with the nexium supressing all gastric juices (as I understand it), not the best diet, surely leaky gut, who knows what intolerances - that makes for one big mess!! (thank you very much doctors for your help (NOT)!).

I supposed I could have just dropped one capsule a day, then later the 2nd one - but we will see what happens. I am thinking that I am eating such a simple diet, I can't see how there would be a problem - but who knows if my body is able to produce enough gastric juices now.


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DMarie Apprentice
Cooking other meals of the day aren't really too hard. But breakfast has always been really hard for me... even before gluten-free. Now it's just harder.

Thanks! :)

Hi Lizard!! I am with you - breakfast has always been hardest for me - because I like "breakfast foods" for breakfast. That said, I am having to revise my ways.

Anything you would eat for other meals have for breakfast (didn't seem very appetizing to me at first - but it is working).

Since you said allergic to egg whites, I am thinking not an intollerance, so not something likely to get better. I know there are some subs to eggs though. Maybe in the cook book you have? You might check the Pecanbread site to see if they have a sub for eggs (or someone else might post).

I had dropped dairy before trying this way of eating (I am only in my first week, so just getting my feet wet). I have found that I tolerate a small amount of the yogurt (no gas, which is amazing - and no stomach cramps hours later either). However, many who post here have mentioned making coconut yogurt - so that might be an option. If this is an option, coconut yogurt with cooked fruit is tasty.

I have found that getting ground chicken or turkey and mixing in my own spices (I like fresh garlic, sage and salt) makes good "sausage" patties.

I had chicken soup yesterday for breakfast, with chicken patties. Since I am on the earliest stages of this - I will likely stick with soup/patties for awhile, or yogurt/fruit for awhile.

In later stages almond meal can be used. I previously made waffles/pancakes gluten/dairy/egg free - so surely it can be done on SCD. There are alot of recipes out there - searching through them helped me greatly, because I was wondering what I was going to eat! :huh: Especially since I am not the biggest veggie eater in the world. A site that has alot of recipes is: Open Original Shared Link

ArtGirl Enthusiast
What do you guys eat for breakfast?

I can't have eggs or dairy, so my breakfast looks very similar to my lunch and also my dinner. I usually eat leftovers from other meals.

Right now, it's mostly chicken/carrot soup and maybe another vegetable. Maybe some cooked fruit. If not the soup, then definitely a protein from some cooked meat.

I have made a very nice pumpkin stew that I like for breakfast (or anytime).

Peal and cube a raw baking pumpkin. (about 1-1/2 cup worth)

Put in pan with apple juice or cider to add a liquid.

Cut into small pieces a couple dried prunes - or more depending on your taste

Simmer covered on the stove until the pumpkin is very soft and almost mushy. (add more juice if it dried out)

The apple juice and prunes sweeten it quite enough so you don't need to add any honey. And the prunes flavor it so there's really no need for spices. It's a different flavor than the pumpkin pie porriage, which is also very good.

AliB Enthusiast
Something else I did today is I stopped taking my Nexium. I have GERD and actually had surgery a few years ago to repair a very large hiatal hernia and to fix the GERD (procedure called a nissen fundoplication - they wrapped the top of my stomach around the lower part of my esophagus to stop it since medication alone wasn't fixing it).

I should not have needed any medication after the surgery, but if I didn't take 2 nexium capsules a day, then I would start getting pain in my upper chest. However, I also had a stomach function test done years before that which indicated things move slower than a snails pace through my digestive tract. So, with the nexium supressing all gastric juices (as I understand it), not the best diet, surely leaky gut, who knows what intolerances - that makes for one big mess!! (thank you very much doctors for your help (NOT)!).

I supposed I could have just dropped one capsule a day, then later the 2nd one - but we will see what happens. I am thinking that I am eating such a simple diet, I can't see how there would be a problem - but who knows if my body is able to produce enough gastric juices now.

One thing that went away pretty rapidly after I gave up gluten, dairy and most carbs was my GERD and hernia. I wonder how many people would have been able to avoid surgery and have treated their stomach and gut issues quite successfully by doing that!

Although GERD is commonly assumed to be due to too much stomach acid, in fact the reverse is true. The acid level in the stomach encourages the diaphragm to close. Without enough acid it does not close properly allowing acid to escape back up into the Esophagus.

Natasha Campbell-McBride has found that giving patients extra acid actually helped stomach problems to sort themselves out.

AliB Enthusiast
Hi to all!

I have a question: I have been seriously considering doing this diet for a trial... I have the "official" book and another cookbook that is SCD specific. What do you guys eat for breakfast? I am allergic to egg whites, and can't do dairy, at least right now. All of the recipes for breads and such have egg whites, which I could probably replace, and/or the yogurt.

Cooking other meals of the day aren't really too hard. But breakfast has always been really hard for me... even before gluten-free. Now it's just harder.

Thanks! :)

I think it is as much a case of changing the mind-set as anything. We have been programmed since kids to have certain foods for breakfast, whether it be cereal, or eggs or whatever.

We have to try and just view it as another meal. In some cultures they just have what they can find - the Kalahari bushmen often start the day with pureed bitter berries. Yum.

My husband stopped eating the gluten-free cereal and now has just fruit for breakfast, which is apparently better eaten on its own anyway. He's not on the SCD but has just decided to do that and is happy with it.

I had a problem with eggs initially but am ok now.

Eggless muffins, turkey or chicken patties, fruit, chicken and carrot soup, leftovers from the previous night's meal if any are all option. I like to make a nice thick smoothie with a banana, a couple of chopped carrots (cooked or raw if tolerated), some ground almonds and a little fruit juice, or one with banana and yogurt and whatever else takes my fancy - there is any kind of combination of those you can have within the constraints of the diet - your only boundary is your imagination!

AliB Enthusiast
Yes, I am talking about a new version of the book, at least according to my doc. The naturopath I saw last week says he was consulted on the new book and that it will be more flexible than previous additions. My doctor said rice will be allowed in the new book and that he thinks potatos are fine, too. Not sure about the potato status in the new edition. New book should be published in a few weeks, at least according to the naturopath.

It will be interesting to see if these changes and/or any others do appear in the new edition.

Cici

So you were right Cici, although it is not a new version of BTVC but a reprinted issue of Drs Sidney and Merrill Hass's original work from the 50's.

Open Original Shared Link

Perhaps the original included some foods that Elaine felt were best avoided due to her subsequent research.

fig girl Rookie

Hi Lizard,

Breakfast is hard for me too - i have to be at work really early also and sometimes have to work late so i try to cook a good bit on the weekends. Lately i've been eating just left over chicken breasts that i cooked in the crock pot and some yogurt with bananas for breakfast and it hits the spot. If I have a little extra time in the mornings i'll make a yogurt and banana smoothie.

Dawn - i make chicken patties a lot too. All i can tolerate right now is a little salt and pepper for seasoning. I'll add lemon juice to fish though. I may try putting some of my cooked veggies in the food processor and adding those to the ground chicken for something different and to give it more flavor. I had bought some all natural ground pork from Publix and cooked 2 small patties with nothing but a little olive oil - i had a few bites tonight and was going to eat it in the morning for breakfast but i have a little gas now so maybe i won't. <_<

mftnchn Explorer
I think the hardest part will always be the "convenience" factor. It is hard to have to make every single thing from scratch. If I mess up, it would most likely be due to this factor, and not a craving for something (because I don't have those cravings and can easily find something else that I like just as much as something that is bad).

...Guidelines are helpful, but perhaps good to remember that Elaine did not specifically work all the details out - point being that everyone is different so everyone's path will be different - with regards to timing, food selection, etc.

Yes, the convenience and difficulty eating out when traveling.

Yes, I agree about the guidelines. I use pecanbread as a guide but not rigidly, just to try to use foods that other people have found easier to digest. But still have to do my own based on what I react to and what I tolerate.

Sherry

mftnchn Explorer
I am not a happy camper with this. Sure wish it would stop. :angry:

Dawn, I am not sure what the cause of the mucous problem is, but I recall a doctor once telling me that the membranes can get very hypersensitive (which is what asthma is, irritation in the membranes.)

If it is food intolerance, as soon as you notice the symptoms after eating, take a 1/4 tsp or more of soda in some water. See if that helps. It is what my allergist has me do.

Sherry

mftnchn Explorer
Hi to all!

I have a question: I have been seriously considering doing this diet for a trial... I have the "official" book and another cookbook that is SCD specific. What do you guys eat for breakfast? I am allergic to egg whites, and can't do dairy, at least right now. All of the recipes for breads and such have egg whites, which I could probably replace, and/or the yogurt.

Thanks! :)

Some are doing coconut milk yogurt. I do very well on goat milk yogurt.

Muffins made without eggs.

I just love cooked fruit with spices added and honey to taste. Try cinnamon, whole anise, or whatever.

Also I love the carrot/chicken soup as I "doctor" it up.

Sherry

pele Rookie
What do you guys eat for breakfast?

Thanks! :)

Ground turkey, winter squash, applesauce, fresh pear, fried eggs. And that was just today. I only like local farm eggs, so if the supply dries up over the holidays (likely) then I will substitute more turkey, or ground beef. I aso eat fresh greens or cooked carrots sometimes, and if I am cheating, turkey bacon.

pele Rookie
You know, I was thinking about sparkling water on the way to work this morning, thinking that might be a nice addition to the grape juice, which I really like BTW.

Okay, this is fascinating to me. I am actually treating for Adrenal Fatigue right now. I am hopeful that the change in my diet will eliminate various problems and ultimately let me wean off the medication I am on. The medication gave me my life back (Cortef) - but - would really like it is this were not a lifetime thing.

Another beverage: lemonade made with honey.

Adrenal fatigue--me, too. A year ago I had a big bronze patch on my abdominal skin, a sign of adrenal collapse. My dear GI doc scoffed and said I was fine.

pele Rookie

Thanks, everyone, for reading the article about fecal bacteria. I am totally confused about probiotics. I appreciate the insights you've posted here.

GermanMia Newbie
Do you realize there is a direct connection between Gluten Inntolerance/Sugar problems and Adrenal Fatigue? You can have you adrenals checked out if you're open to it to try to find the source of your imbalance.

That seems quite reasonabe to me. I remember when I was preparing my examinations at the university I had more stress than ever before in my life because I had to look after my alcoholic mother, do my job, and learn - and that's the only time of my life I can remember that I could eat normal meals plus tons of chocolate without any problems. I always wondered if it had to do with all the adrenaline I produced then.

GermanMia Newbie

Thanks for posting the article, pele. I already was confused when I read BTVC for the first time because as far as I knew bifidobacteria are very important, e.g. for preventing allergies. Since then I was researching about probiotics but never came to a reasonable conclusion. Now I have some more stuff to chew on :blink:

Only I know that my anaerobe flora (which contains bifidobacteria) was normal last time I checked while the aerobe flora (which contains lactobacillus, enterococci, e. coli) was completely messed up. At that time I had no problems with bloating at all which makes sense because bifidobacteria are said to prevent bloating. Now I have huge problems with bloating, so I'll wait until I get the results of the stool tests.

Anyway I think that when the gut heals and you only take in food which can be digested, the flora will come back to normal even without taking in lots of probiotics. It's only that probiotics help in the healing process because they help digesting and thus prevent irritations.

kschauer Rookie

I'm happy to report the yogurt in the thermos method turned out beautifully! It tastes fantastic - so much better than the store bought yogurt. Tonight I will make two batches.

So I am officially on day one and feeling okay. No cheesecake until tomorrow, or jello as I can't find unsweetened juice, but the soup is good and I made turkey beef patties. Unfortunately I am working long days so I have a lot of time at my desk that I used to spend snacking on rice cakes and fruit. I froze some soup and patties so when I walk in the door starving I don't have any excuse for grabbing those corn chips. We'll see how it goes!

I am traveling next week - what can I make to take with me? I can't think of anything very portable...I used to do nuts and fruits, but those come in later on. I don't know exactly what I can get away with, security wise. Will they think my cheesecake is some kind of explosive :rolleyes:

DMarie Apprentice
Dawn, I am not sure what the cause of the mucous problem is, but I recall a doctor once telling me that the membranes can get very hypersensitive (which is what asthma is, irritation in the membranes.)

If it is food intolerance, as soon as you notice the symptoms after eating, take a 1/4 tsp or more of soda in some water. See if that helps. It is what my allergist has me do.

Sherry

Sherry - That is baking soda mixed in water, right? I will have to try. Yesterday afternoon, last night the mucous wasn't quite as bad. Same with this morning. I was a severe asthmatic as a child, so that is interesting to note. I was on allergy shots for years. During my teen years I was able to be weaned off the shots - and was able to stop taking asthma medication. No problems with allergies (grasses, weeds - not food) or asthma for years. If it is hypersensitive membranes, I wonder what would help?

I seem to have a headache by evening. But the headache is different than what I have had before - so I am not sure if it is related to anything I am eating (which is minimal - the food). I am not starving all the time, which is good - but afraid to add things back in. I am having a small amount of gas sometimes (but it doesn't seem to be smelly like before - it was awful and constant before). It is random.

I am thinking that staying on such a limited diet for very long can't be very good nutritionally. I am a little concerned about not being able to rotate things around (there aren't enough fruits/veggies/meat to rotate). I seem to do better rotating things. But I eat the same things at each meal (with the exception of eggs - I have had them 2x this week - and won't eat them until Sunday or Monday again - I don't want to have a major problem with eggs). The soup I am tolerating but tiring of (thanks Sherry for describing how you doctor yours up - I would have never considered spices such as cinnamon or nutmeg in this - but does change it up a little).

I am also concerned that the total lack of variety will be what gets me. I ate a beef patty for lunch yesterday - had to choke it down. I need to figure out how to make ketchup or something for it. That and some cooked apples with yogurt actually held me all afternoon - but it was tough getting it all down. Same with cooked carrots or zuchinni - it gets tough choking this stuff down. It just doesn't taste that great to me. I miss my salads.

It is depressing to go to the grocery store - because about 90% or more of it is off limits. I also need to remember to cook for my family. It is somewhat depressing to be in the kitchen and I find myself not wanting to put alot of effort into figuring out what starch to make them to go with whatever else I am cooking (which has been minimal this week). Maybe I will feel better after my books get here (BTVC and a cook book - for some ideas and also how to make basics such as ketchup).

kschauer Rookie

Scatch the feeling okay post. My face is flushing red and I'm hot like hot flashes every so often. I also had a major energy drop two hours after eating the soup for lunch, it was almost like I was asleep and could do nothing about it and my coworker said I was white as a ghost. The sleepiness isn't entirely unusual, I've felt that before in the last year, but I haven't been feeling that in the last couple of months I'd say. Anyone else have this when starting out? I brought maybe a tablespoon of honey today and have been eating just a taste when I want to reach for the rice cakes, could that be causing my sugar to go up and down too much?

DMarie Apprentice

After eating my cooked apples with yogurt for lunch today, I had a headache. Not a bad one, and it passed within 30 minutes for the most part - but I am wondering if that means don't eat apples? They were not a problem before today. No other problems (other than the big C - I dropped all magnesium supplements and I have been taking those for awhile now). I have also gotten a headache after eating the soup. Does this mean stop - and don't go any further?

Hmmm...forgot I can do pears on Stage 1. I'll have to try those cooked. Then maybe I can do bananas one day, apples the next, and pears the next. That would probably be helpful.

I tried a little bit of yogurt in my soup. That was a tasty addition.

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      For me I gave up oat products and it finally cleared. I had a whole body reaction for months. Two additional culprits for me: shared grill at a restaurant or a shared toaster.  Hope you have relief soon. 
    • Russ H
      It can take between 6 months and 2 years for the dermatitis herpetiformis rash to resolve. The symptoms of dermatitis herpetiformis arise from deposits of certain antibodies building up in the skin. These deposits attract immune cells leading to inflammation and blistering. It can take 10 years for the deposits to be reabsorbed although symptoms resolve long before this.
    • trents
      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
      Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years.  I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history.  Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as  I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as   containing gluten or that may have gluten! Am I getting glutenized orally by these products?  As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they  do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will?  In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old.  I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice?  Thank you for your time.  Respectfully,  Linda
    • trents
      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
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