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Specific Carbohydrate Diet (SCD)


AliB

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ArtGirl Enthusiast
I think I am not getting enough probiotic in the yogurt alone. Need to figure out what to do about that.

What makes you say that. Just curious how you can tell.

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fig girl Rookie

I'm experimenting today with a raw veggie smoothie in the mornings like I used to do. It's the first raw I have tried since starting SCD. I want to see what symptoms I have and what it does to the constipation and bloating issue.

Also I think I am not getting enough probiotic in the yogurt alone. Need to figure out what to do about that.

Sherry

Hope you do ok with it Sherry. I've been pleased with adding the small green salad and seem to feel a little better with it. I'm going to try juicing raw veggies again sometime soon and hope it goes well. Hope you can figure out your probiotic dosage. I eat about 1/2 cup of yogurt 3 times a day and take one capsule (pure encapsulations) first thing every morning with a glass of water and it seems to be going well.

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Yenni Enthusiast
Hi Yenni,

yes, I have the two Grain-free Gourmet cookbooks, Eat Well Feel Well and Healing Foods. As I have a fructose malabsorption I have to change things sometimes but that's okay. But as lots of SCD recipes are based on nuts and almond flour I'm not quite sure if this books would make sense for you. Of course there's no soy and grains, but nuts and cheese which I'm not sure how to substitute... Did you look at www.scdrecipe.com/ and www.scdiet.org/2recipes/indexa.html

This might give you an idea how the recipes in the books look like.

Hope that helps :-)

Mia

Thanks!! I might give one of them a try to get some inspiration later. As is now I use oil instead of butter in recipes and coconut flour instead of nut flours. Not always working out but sometimes it does. And I try make stuff from Elaine's book so far only.

Do you all get your yogurt makes locally or online? I haven't been able to find one locally so far.

I am going to try coconut milk yogurt..

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siNdreAd Rookie

Hi all - wanted to share my experience with SCD as well ask a few questions.

Going SCD for me was the greatest improvement I had ever seen in my digestion after 10 years of trouble - the problem was I couldn't maintain it because I couldn't adapt to not having carbs - always got low energy and felt horrible (although my stomach felt better!) after a few days on SCD. I literally could not function after a week of scd. Not to mention the cravings were really bad.

In contrast when I went gluten free it was infinitely easier because I could replace all my carbs with gluten-free food and I started getting a lot of the same benefits. I did go through a withdrawal but ultimately I could be happy on a gluten-free diet and not have cravings for a liftetime.

Unfortunately I think I may be the type of person who needs to continue on to SCD but I have intolerances to nuts,dairy, and egg.

How did people on SCD deal with fatigue from not having carbs? How did people handle the cravings?

Do you all still consume the SCD yogurt even if you have dairy intolerance?

With my intolerances could I maintain a healthy diet on SCD?

thanks!

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mftnchn Explorer
What makes you say that. Just curious how you can tell.

Well the bloating and constipation issues that have continued off and on, and the fact that I am still on antibiotics for lyme treatment and was reading that for lyme patients yogurt doesn't provide enough probiotic.

Sherry

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mftnchn Explorer
Thank you all for your kind welcome and for all the suggestions. I will look into the SCD some more. There are many foods I don't tolerate but I find it almost impossible to identify exactly which ones they are. I never noticed an actual reaction to gluten. I don't have diarrhea but am constipated however it's the same now as it was when I did eat gluten and I haven't eaten gluten on a daily basis in years anyhow.

My two biggest hormonal symptoms are abdominal distention and fluid retention. Those are also two very common reactions to food for me - definitely for dairy and some others. I would love to just eat chicken every day because I like it and I don't get tired of it, but I do get concerned about becoming intolerant to it. I haven't seen any improvements in my health over the least year or so and I think part of the issue is the gut dysbiosis and also adrenal fatigue. I am not sure why my hormones are so messed up. I don't seem to get more than 2 days without abdominal distention and fluid retention. Plus I gained weight and it's really hard not to gain anymore. My metabolism is really sluggish right now and I hate it.

Sorry to vent...I am just so tired of feeling this way. You'd think with eating protein, veggies, and fat and not having excessively high calories I shouldn't be gaining weight.

Abdominal distention and fluid retention as well as weight gain are gluten symptoms for me; they recently returned when I got a small amount of gluten via contamination on a regular basis until I figured out the source.

I'm still trying to figure out the best approach but have had quite a bit of improvement on SCD. This could be part of the answer for you. If you are celiac even small amounts could cause your symptoms. Have you been tested for celiac disease?

Sherry

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mftnchn Explorer

Hello Sindread, welcome.

How long did you stay on SCD? I had a similar response initially but after about a week it improved a lot. I have noticed a huge improvement in cravings, fatigue, stamina, etc. Initially I used quite a lot of honey but then was able to wean off of it to a more reasonable amount (just a little in things).

Those with dairy intolerance here have been making coconut milk yogurt. Would that work for you? I tolerate the goat milk yogurt just fine. Several people have been able to tolerate small amounts of goat milk yogurt after a little time on SCD. You can check out www.pecanbread.com for some options for dairy sensitivity and probiotics.

You might be able to find and use duck eggs for baking. I can't suggest much about nuts. I guess it depends on how sensitive you are, if it is IgE or IgA.

Sherry

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pele Rookie
Hi all - wanted to share my experience with SCD as well ask a few questions.

Going SCD for me was the greatest improvement I had ever seen in my digestion after 10 years of trouble - the problem was I couldn't maintain it because I couldn't adapt to not having carbs - always got low energy and felt horrible (although my stomach felt better!) after a few days on SCD. I literally could not function after a week of scd. Not to mention the cravings were really bad.

In contrast when I went gluten free it was infinitely easier because I could replace all my carbs with gluten-free food and I started getting a lot of the same benefits. I did go through a withdrawal but ultimately I could be happy on a gluten-free diet and not have cravings for a liftetime.

Unfortunately I think I may be the type of person who needs to continue on to SCD but I have intolerances to nuts,dairy, and egg.

How did people on SCD deal with fatigue from not having carbs? How did people handle the cravings?

Do you all still consume the SCD yogurt even if you have dairy intolerance?

With my intolerances could I maintain a healthy diet on SCD?

thanks!

Howdy and welcome!

I just finished reading a quote attributed to Elaine in which she says the SCD is NOT a low-carb diet, but it could be depending on which allowed foods you eat. So you could make the SCD a higher-carb diet by eating more fruit and veggies and things like honey, lentils and split peas.

I don't think I have ever had fatigue from the SCD, although I've had lots of fatigue from hormone insufficiencies.

I do not use any dairy products at present.

My cravings for chocolate, rice, sugary stuff, etc., went away in two weeks.

If you decide to give it another try, hang in for at least a month and hang out here!

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pele Rookie

Hey everyone,

While drifting through the www I stumbled across this website. It has a bunch of info on the SCD including a section with Elaine's answers to many questions. Nothing earthshaking, but interesting:

Open Original Shared Link

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kkcarlton Newbie
Abdominal distention and fluid retention as well as weight gain are gluten symptoms for me; they recently returned when I got a small amount of gluten via contamination on a regular basis until I figured out the source.

I'm still trying to figure out the best approach but have had quite a bit of improvement on SCD. This could be part of the answer for you. If you are celiac even small amounts could cause your symptoms. Have you been tested for celiac disease?

Sherry

I have not been tested for celiac disease, however, I have not eaten out in weeks and all my food is fresh - nothing canned, packaged, frozen, etc. I buy chicken, beef, etc. from a farm that pastures their animals, I buy fresh veggies, and I use olive oil, coconut oil, etc. When I am distended from food it usually goes away the next morning and then reappears after I eat, but this is just 24/7. I don't know how it's possible to gain weight and have a hard time keeping the weight off on protein, veggies, and fat. It's a puzzle to me unless the bacterial overgrowth is contributing to it.

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siNdreAd Rookie

Hi, thanks for the info :D

I tried SCD for 1 week - 4 separate times. After one week I was always too weak to continue. Another issue with SCD for me is that I am an athlete and had important games 3 x a week and the lack of carbohydrate was killing me, no matter how many vegetables I tried to eat.

I want to try to wean down on the carbs until I can go on SCD again but I'm just not sure it will ever work w/ my body.

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mftnchn Explorer

KK, I am not sure of the answer for you on this. If it was me, the least little bit of gluten would contribute. It seems to have at least two effects for me, first inflammation. Part of the inflammation is fluid retention. Secondly, my body seems to go into starvation mode when on gluten, and just lays down fat as much as possible. Maybe this is triggered because of the malabsorption and digestion problems, not sure. I was pretty much asymptomatic when I was diagnosed, the only long term symptom was a tendency toward constipation.

The SCD is helping though I don't know all the reasons. I lost 10 pounds the first little while, then have maintained on the diet. I notice that whenever I bloat, and don't eliminate well (I tend to have a little BM every day but doesn't feel like it is enough), I'll gain weight. I know that I am not digesting starches well (probably secondary to villi damage from celiac disease), and probably the weight issue comes from that problem still healing.

Your diet sounds pretty clean. I'd try an absolute gluten free diet as one option but you'll want to do any testing prior to eliminating. As it is with gluten light you are not likely to test positive on standard blood/biopsy. There are many hidden sources of gluten in foods and personal care products. Then I'd check for sugars and SCD illegals in your diet. Then make sure you are getting probiotics. If you are still having problems, or have other symptoms as well, might need to seek for another factor in the mix. For me, that is lyme disease.

Sherry

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kschauer Rookie

Hi Everyone,

I made it through the states and I'm in London - still on the SCD! No problems with the gluten free meals on the flights, I just skipped the rice and potatoes. I bought a yogurt maker, lugged the thing from the states to London and then proceeded to blow the thing up by not converting the power properly. Energy and money wasted. :angry:

I'm making soup, and no yogurt - feeling great actually, despite the lack of sleep. One thing - when I go to the bathroom there is a large amount of oil floating - I haven't eaten a large amount, at least not what I thought was a lot. I've mostly eaten fruit, lean meats, steamed veggies, sometimes with butter, sometimes not. Anyone have a clue about that one???

Since I am out of the yogurt making business for tonight, can I just eat plain yogurt? Nothing is added to it...can't hurt me right, it just won't do me as much good as homemade.

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ShayFL Enthusiast

During the first month or so of any dramatic dietary change, your poos can look and do some strange things. I wouldnt worry about it at the moment. You are still healing. It may be that you cannot even digest that butter and you see it in the loo.

***I have been making my RAW goat yogurt and loving it! No problems. I have made 2 batches with an organic acidophilus yogurt (commercial) and it had a nice tart, but not too tart taste and very smooth.

But everyone talked about the "greek" yogurt so I picked up this brand:

Open Original Shared Link

I made a batch and when it was done today I realized t smelled just like buttermilk. And it tastes like buttermilk too.

Anyone know if this is o.k. to drink. I mean, buttermilk is o.k. I am thinking it was the 24 hour fermentation that made it so sour. Commercial greek yogurt is probably only fermented for 8 hours.

Any thoughts?

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DMarie Apprentice

Welcome kkcarlton and Sindread!

Wow - I don't think I was able to get online on Friday - and there were problems with the site over the weekend - alot of activity!

I did try the coconut yogurt. I did not consider that a success. :( I drained the coconut milk, cut out the coconut, and blended it in the blender with boiling water. I then strained the milk, and added more boiling water. Mixed in my starter and some honey. The milk separated (perhaps that was what it was supposed to do). The part on the top was thin and barely held together. Very, very tart. Really reminded me more of sour milk. Perhaps this is what coconut yogurt is; if so, I didn't like.

I put the coconut pulp on a sheet pan and popped into the oven at a low temp to dry out. Is this now coconut flour? Doesn't really have any taste, so I don't know what I would use it for. Any ideas?

I did find Farmer's Cheese at Central Market (no Publix here). Kind of spendy (around $6 a lb). As my husband was just laid off, I can't afford to get this in great quantities. Really alot like the yogurt cheese I dripped, except very mild flavor. Can I make my own farmer's cheese (legal)? I have seen recipes online. Seems I just need milk and some lemon (I can use yogurt - but that would be the same as what I am doing now). I like the mild flavor. I wonder if there is something else that Friendship Dairy does so that theirs is considered very low in lactose?

Sindread - I consider myself to be lactose intolerant. I do not have a food allergy to milk, but consider myself to be dairy sensitive. I am able to eat some of the dairy yogurt each day. I find that it works best for me when I add a couple of spoonfuls to my cooked fruit or to soup. Eating it alone usually gives me a headache - and I have to keep it to about 1/4 a cup at a time that way. I probably eat about 1/4 to 1/2 cup a day by adding spoonfuls here and there.

Also, I felt kind of weak the first week as well. I would say that is because I was hungry - not enough solid food. I stuck with the soup/intro for a couple of days - just to be gentle to my body. But eating more solid food makes me feel much better. Fruit is a good pick me up for me. I had been decreasing the gluten free carbs I was eating prior to going on this, so I was fortunate and didn't have to go through a carb withdrawal.

kkcarlton - I was trying to rotate my foods as well since I seemed to have miscellaneous reactions to various things - it was hit or miss. I am not eating enough foods right now to rotate in the right way, but I do alternate as best I can (such as, apples one day, pears the next).

The diet is going okay. But, I have had it with the chicken soup - I must say. That is not cutting it any more. I have eaten some additional foods, but I know I haven't done it right. Such, as I made a soup that had butternut squash and tomatoes in it - so that was 2 foods added at once. Then a few days later I ate some cooked broccoli. I am pretty sure the tomatoes are a no go (they were sometimes bothersome before) - so will make the soup without the next time. I think I am moving more into eating things that were okay for me before, as opposed to following the specific stages (as in I had onion in my soup, and I think that is in a latter stage). However, I am not eating raw yet, or nuts, just using some of the almond flour in muffins.

Still constipated. Taking 1000 mg of magnesium seems to be almost too much. So I am going to try 750 mg. It seems I go a little each day, but only a bigger movement every so many days. I am drinking the prune juice in orange juice in the morning, eating an almond muffin in the morning, taking magnesium. I am not sure what else to do but am hoping for improvement soon. I previously took Metamucil every day (sugar free)...but that is not legal. I am wondering if psyllium would be okay? I know I can find that at the health food store - tastes like cardboard, but might be helpful.

I thought you guys might find this information interesting about canned pumpkin (I know conversations have been had about whether canned veggies and such are okay if they don't have any sugar/starch added - and Elaine's point was that sometimes things are added in the manufacturing process but not disclosed. Libby's pumpkin claims 100% pure pumpkin - nothing else. Here was the response received by someone on the pecanbread forum re: this pumpkin:

"Well, I wrote Libby's and I specifically asked them every question I could think of about their pumpkin. I requested a signed letter from a food scientist, I asked if anything was added at any point during the manufacturing process, and I asked about cross contamination and their production lines, and whether or not the pumpkin was canned on a dedicated line.

I received an unsigned letter that stated that Libby's 100 percent pure pumpkin was...gluten free. And that any other information would be giving up trade secrets."

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AliB Enthusiast

I wonder if it was pulping the coconut flesh with boiling water that affected the outcome of your yogurt, Dawn?

Apparently if milk has been super-heat treated it will not sustain the bacteria - perhaps the same thing happened with the coconut.

Heating foods above 116 degrees apparently destroys the enzymes. Why not try extracting the coconut milk with medium warm water rather than hot. It will need to be slightly warmer than 100 degrees as the coconut itself will cool it down, but it might be worth trying that. Are you sure the flesh was ok? Young coconuts are better if you can get hold of them.

I usually test by smell and taste. If it doesn't smell quite right and the coconut water doesn't have that lovely coco-nutty flavour then it may be too old. As they age, other bacteria starts to grow. Any signs of yellow or pink colouring on the flesh or slimy-ness, it's bad. Also if any of the brown inner skin comes off easily and you end up with bald bits looking like Gorbachev's head (scuse the analogy!) then chuck it out. I had to throw 4 coconuts away recently that were like that (I won't be buying them from him any more!). They were cheap - now I know why!

I use the coconut flesh after extracting the milk for SCD muffins. You can replace some of the almond meal with the coconut. I also make a Coconut and carrot cake - the recipes was on this thread somewhere. I'll have to try and find it and put it on the SCD recipe thread.

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AliB Enthusiast

Shay, did it say on the yogurt which bacteria they use in the Greek yogurt? Different bacteria creates different results.

Hi Kathryn. So you're over here in good old Blighty! What a pest that you wrecked your Yogurt Maker. They sell them in Lakeland shops if you want one from here. Whether there is one near to you I don't know.

I buy the brand of Fage 'Total' Greek yogurt - you should be able to get it in virtually any major supermarket over here. I know Tesco, Asda and Morrisons definitely sell it.

It's obviously not SCD 24-hour but I seem able to cope with it and I do eat it when I run out of the home-made stuff and haven't got round to making any. I usually use it as a starter. It has Acidophilus and Strep thermophilus. It is lovely and thick and creamy.

How long will you be over here for?

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ShayFL Enthusiast

It has 5 strains, but they only list 3.

Oikos 5.3oz Plain

Serving Size 1 Container

Amount Per Serving

Calories 90 Calories from Fat 0

% Daily Value*

Total Fat 0g 0%

Sat Fat 0g 0%

Trans Fat g

Cholesterol 0mg 0%

Sodium 60mg 3%

Total Carbohydrate 6g 2%

Dietary Fiber 0g 0%

Sugars 6g

Protein 15g 30%

Vitamin A 0% Vitamin C 0%

Calcium 20% Iron 0%

*Percent Daily Values are based on

a 2,000 calorie diet.

OUR FAMILY RECIPE: CULTURED PASTEURIZED ORGANIC NONFAT MILK. CONTAINS FIVE LIVE AND ACTIVE CULTURES INCLUDING L. ACIDOPHILUS, BIFIDUS, AND L. CASEI.

***I think I will just buy the plain acidophilus yogurt next time. It only has acidophilus.

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mftnchn Explorer

Dawn,

I am wrestling with the constipation issue as well, and can't get a consistent solution. I was adding in magnesium, but for days could hardly go except for very thin small amounts. Researching this sounded like spastic or spasmodic constipation, where as before what I had was atonic. The mag. helped a lot with the atonic, but I wondered if it was too much for the spasmodic type so quit using the oral (I still take magnesium shots) and things got much better for two days with normal size, i.e. no spasm. But today nothing again.

I've also added in my first raw, a raw veggie smoothie first thing in the morning. At first I thought it was making it worse, but the last two days seem to be tolerating it. My thought is to give it a few more days to see if things even out.

I'd do some research on the psyllium to see if it would be really hard on the intestine.

Hello to everyone else! Missed you all over the weekend :)

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kkcarlton Newbie
Dawn,

I am wrestling with the constipation issue as well, and can't get a consistent solution. I was adding in magnesium, but for days could hardly go except for very thin small amounts. Researching this sounded like spastic or spasmodic constipation, where as before what I had was atonic. The mag. helped a lot with the atonic, but I wondered if it was too much for the spasmodic type so quit using the oral (I still take magnesium shots) and things got much better for two days with normal size, i.e. no spasm. But today nothing again.

I've also added in my first raw, a raw veggie smoothie first thing in the morning. At first I thought it was making it worse, but the last two days seem to be tolerating it. My thought is to give it a few more days to see if things even out.

I'd do some research on the psyllium to see if it would be really hard on the intestine.

Hello to everyone else! Missed you all over the weekend :)

I read that psyllium is not good for people with digestive issues but can't remember why. What works for me is 1,000 mg magnesium citrate at bed time and keeping my fat intake up. About 60 % of my diet is from fat, maybe 10% from veggies, and the rest from protein. With that I have a bowel movement every morning. Sometimes I do a coffee enema preceded by a clear water enema and there is always still some stool coming out with the clear water enema, but for the most part I have at least one big bowel movement first thing in the morning.

Kristina

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kschauer Rookie
Shay, did it say on the yogurt which bacteria they use in the Greek yogurt? Different bacteria creates different results.

Hi Kathryn. So you're over here in good old Blighty! What a pest that you wrecked your Yogurt Maker. They sell them in Lakeland shops if you want one from here. Whether there is one near to you I don't know.

I buy the brand of Fage 'Total' Greek yogurt - you should be able to get it in virtually any major supermarket over here. I know Tesco, Asda and Morrisons definitely sell it.

It's obviously not SCD 24-hour but I seem able to cope with it and I do eat it when I run out of the home-made stuff and haven't got round to making any. I usually use it as a starter. It has Acidophilus and Strep thermophilus. It is lovely and thick and creamy.

How long will you be over here for?

I like the Total Greek yogurt, that's actually what I got to eat yesterday. I may go and try to find another yogurt maker, then I'll probably just blow it up in Chile! :blink:

I'll be here until Dec 5th.

...................

Still feeling bettter - the oil is gone, but I haven't eaten any other than what's in the soup. I think I feel better and have more energy. I'm not craving chocolate every 10 seconds at least, and I've stopped eating so much honey because the cravings just aren't there. I've introduced asparagus, mushrooms and green beans, no problems. Fruits: I have eaten grapes and a few cherries, and cooked apples and pears. Today I might try some clementines. I can't believe I'm not falling over from lack of energy or craving potatoes and rice - I used to eat so much of those. The flushing red and fading white stuff seems to have subsided.

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GermanMia Newbie

Hi everyone,

here in Germany we have lots of curd cheese which is very cheap (about 1 euro per pound) and I just tried to use it as a base for dry curd cottage cheese. It has 4 g carbohydrates per 100 g like milk, so I thought maybe just heat it, mix with starter and let ferment for 24 hours. I started with low fat curd cheese (which is the cheapest, didn't want to experiment with more expensive stuff :rolleyes: ) and Total cream yoghurt. The result was astonishing! Firm, creamy, not too tart - just great! I'm not lactose intolerant but had problems with milk and this unfermented curd cheese all my life - but this one felt wonderful in my intestines.

As all kinds of cottage cheese are quite cheap here I plan to try this with crumbly cottage cheese, too. The crumbly kind only contains 1 g carbohydrates per 100 g so I try if it works when I let it sit 12 hours.

Ali,

the old coconuts are the reason why I didn't try coconut yoghurt yet. Thre were lots of them on sale - only 59 cent per coconut - but they looked very old. Greyish round the holes, I suppose it was mold - just waste of money.

Sherry and Kathryn,

I read that psyllum has very good effects on inflammatory bowl diseases like crohn or colitis, especially during remission, because it positively influences some inflammation causing factors and helps protect the mucosa.

I'm now on week two of my new low-fructose version of the SCD. It's quite hard not to have any carrots, pumpkin or cooked apples and reduce banana to half banana per day but I really do better with that. Spinach, corn salad, avocado, small amounts of zucchini and very small amounts of blackberries and cranberries are okay. My belly never has been so flat in years!

Plus I had to take an antibiotic again because of kidney infection. As the doc stated, this antibiotic (levofloxacin) kills absolutely everything including the pathogenic bacteria in the small intestine. And indeed the weakness in my legs, the constant fatigue, the feeling to faint every moment and always be hungry is gone! Now I just have to stick to the low-fructose SCD variety and restore the normal flora so that I won't have the rebound like in summer... Plus maybe I can find out the reason for developing gluten and fructose intolerance. My doc wants to check this: www.kpu-berlin.de/en/Cryptopyrroluria-nitrosative_stress_and_mitochondrial_disease.htm

Anybody ever heard of this? Sounds quite interesting.

Mia

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kkcarlton Newbie

Hi Mia,

I am from Germany - a small town called Rechtenbach just north of Frankfurt (close to Giessen and Wetzlar). Is the curd cheese you are talking about "Quark"? If so, I love it but I am lactose and casein intolerant. I also don't live in Germany anymore but go back to visit my mom as often as I can.

So you found a doctor who is familiar with gluten intolerance? Is he a more naturally minded doctor?

Kristina

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GermanMia Newbie

Hi Kristina,

yes, the curd cheese I mean is Quark :) Funny to meat someone from Germany!

I'm between the Ruhrgebiet and the Dutch border.

Luckily I'm neither lactose nor casein intolerant. Well, gluten and fructose are quite enough :blink:

Ah - no, mistake, sorry. The doctor is a gastroenterologist who is specialised in celiac and other food intolerances, IBD and things like that. But she mostly does diagnosis, endoscopy, blood, stool and H2-Tests etc. She found the SCD idea quite reasonable but cannot do any research about why I developed this gluten and fructose intolerance.

I didn't mean the doc but my naturopath (Heilpraktiker) who is going to look into these other things.

Did you ever hear of this cryptopyrroluria?

Mia

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ArtGirl Enthusiast
Did you ever hear of this cryptopyrroluria?

Never. But apparently it's been known about for over a century.

Did a Google search and this was the first site that came up - it is interesting.

Open Original Shared Link

I hope your doctor(s?) can get you on the right treatment for this soon.

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      Hello, @glucel, Unintended weight loss is symptomatic of Thiamine deficiency.  Our bodies use more Thiamine when we are ill and stressed.  Switching to a gluten free diet can also result in a lower intake of Thiamine.   Interesting Reading: Coronary Artery Bypass Graft (CABG) surgery depletes plasma thiamine levels https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874825/ Gluten-free diet intervention reduces thiamine intake in two weeks... https://pubmed.ncbi.nlm.nih.gov/34583628/ This study found normal people, without Celiac Disease and malabsorption concerns, had a drop in Thiamine after starting a gluten free diet.  They went back to eating a gluten containing diet.  We don't get that option.  Gluten free processed foods are not enriched with vitamins like gluten containing counterparts.  Supplementing helps boost your absorption of essential vitamins and minerals.
    • knitty kitty
      Hello, @Neat1, Yes, neck and shoulder pain can be symptoms of Gerd, which is fairly common in Celiac Disease. Ask for a DNA test, too.  Celiac Disease is genetic.  If you've got celiac disease genes, further testing is warranted.  Some people have Celiac genes, but don't have active Celiac Disease.  If you've got symptoms, your genes are probably activated.   Diabetes, anemia and Thiamine deficiency can cause false negatives on antibody tests.  Some people with Celiac Disease are seronegative.   Thiamine deficiency can cause constipation and gastrointestinal symptoms.  Magnesium supplementation can help with that, too.  Nutritional deficiencies like these are common in untreated Celiac Disease. Keep us posted on your progress!
    • knitty kitty
      Not really.  Blood tests for vitamin deficiencies are not accurate.  You can have "normal" blood levels and have vitamin deficiency symptoms before blood levels change.  The brain sends messages to the body to release into the bloodstream any extra vitamins stored within cells of tissues and organs so that important organs like the brain and heart can keep getting a supply.  Even what you've eaten in the previous twenty-four to forty-eight hours can affect blood tests.  Taking vitamin supplements eight to twelve weeks before testing, will give falsely elevated results.   Because tests for Thiamine can be so inaccurate, as well as time consuming and expensive, the World Health Organization recommends taking Thiamine and looking for health improvements.  Thiamine is nontoxic, even in high doses.  Thiamine is water soluble and any excess is easily excreted in urine.  WHO recommends giving 500 mg/day of Thiamine Hydrochloride for several days and looking for health improvements.  Some people with Thiamine deficiency need higher doses (1000 - 2000 mg/day).   Benfotiamine, a lipid soluble form of Thiamine, can get inside cells without using the thiamine transporters on the cell surface,  which shut down during thiamine deficiency.  Thiamine Hydrochloride has to get in by transporters, or by passive diffusion, which requires higher doses.  Benfotiamine has been shown to promote intestinal healing.  300 - 1200 mg/day of  Benfotiamine are required. Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) can cross the blood brain barrier without a carrier cell, so Allithiamine is really helpful with neurological symptoms, brain fog, balance issues, problems swallowing, gastroparesis.  50 - 1000 mg/day of Allithiamine.  Find the best dose for you.   I understand the skepticism about Thiamine.  If I hadn't lived through it myself....read my blog...I was skeptical myself, but I could feel myself dying and was grasping at straws.  Within a few minutes of taking my first dose of Thiamine, I felt better and was astounded at how simple the solution was.   Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.   P.S. Riboflavin Vitamin B2 deficiency has been linked to migraines.
    • trents
      As far as your neck and shoulder pain goes, yes, this could be a symptom of celiac disease as one of the more than 200 symptoms associated with celiac disease is joint pain.
    • trents
      10g of gluten or the amount in about 4-6 slices of bread daily for several weeks should be a sufficient "gluten challenge". Your primary care provider should be able to order those tests.
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