Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Specific Carbohydrate Diet (SCD)


AliB

Recommended Posts

jmd3 Contributor
My only thought is if you have not been eating a lot of almonds, then maybe you just ate too much at a time. You don't need to eat any nut flours on the SCD, they are simply an option.

Remember, the SCD is not so much about what you eat as what you do NOT eat.

I can eat any type of nut, have a bit of trouble with cashews, I stay away from those - they are suppose to be the hardest digested I am told. I usually only eat raw nuts, except for pistachios.

I was just making some things with the almond flour that we/my family has been doing without for awhile now. Rolls - In the healing foods book there is some wonderful receipes "crusty onion rolls", they are wonderful. I just ate one of them, and wham, it felt like I had been in a boxing match, or bear hugged I was in so much pain! I stopped the almond flour and in a few days things cleared up for me. Perhaps it is the almond flour that I am using, not my own, but bob's ???

If I eat to much yogurt it doesn't fair to well. I have backed off - I eat several spoonfuls a time morning and night. I was eating way to much when I first started.... My daughter does quite well with when she eats it faithfully, tons of allergies, her sneezing stops without incident... if she stops eating the yougurt, then it comes back. I have made goats yogurt, and not having luck with it, but figured out I was heating it to high temp wise, so I will try again sometime in the future. Looking into the different types of probiotics to culture it from now too.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 2.4k
  • Created
  • Last Reply
pele Rookie

So do you think the almond flour had something else in it?

Interesting about your daughter and sneezing. When I did a dairy experiment awhile back it gave me a runny nose along with fatigue and brain fog.

You can do the SCD without dairy if you prefer. You can culture other things besides milk, like cabbage or coconut milk. Or take probiotic pills or drink kombucha.

mftnchn Explorer
Hi, I've been following this diet for just over two weeks now. Before that I had been gluten-free for about 6-7 years and wheat free before that for a few years.

I just need reassurance. Before I had completely eliminated diarrhea problems unless I accidentally ate gluten. However since starting the diet I have had 2 occasions that start off with painful bloating, then quickly needing to void first yeasty white stuff then solid stools and finally diarrhea. This time the diarrhea had quite a bit of white almost jellyfish-like substance floating in it. I'm hoping it's just parasite/yeast "die off", but I am worried I have made myself intolerant of certain foods that I could tolerate before.

These episodes seem to follow having butter in the morning, and I have had aches after having coconut oil in the morning too. I've just introduced yoghurt, but I'm hoping it was the butter as yoghurt seems to be an important part of the diet. I need to start keeping a food diary. Having read through a bit of this thread it seems lots of people have had the same thing happen, so hopefully it is normal and will clear up, but I am going to take it slooooow as I can from now on.

As far as staying strict I don't seem to have any problems yet, though it is quite expensive as the only thing that keeps me full is meat at the moment. My mum doesn't think a meal is a meal some form of potato, but we have a decent menu going on now. Haven't been very successful with gravy yet, that is one thing I need to get sorted!

Welcome, Matchew.

The stool changes ARE common. I had a lot of this, especially the first week. Lots of weird stuff, and also a bunch of visible parasites, TMI to describe. SCD has a great cleansing effect when you have stuff that has been feeding on undigested carbs. IMO, this is confirmation that you will benefit from SCD.

The intestinal damage can mean that harder to digest foods can be harder to handle. So the fats might not be doing so well. Those with lots of experience on SCD (and Elaine in BTVC) suggest backing off on anything that you don't seem to handle, and retrying in a month or so.

I know what you mean about not feeling full. I need to munch on nuts between meals, and occasionally add some honey. It seems to partially be a blood sugar thing. I think over time you'll sense what to do.

Also, the first 2-3 weeks there can be a lot of hunger/cravings for carbs. Once you get through that, you'll notice a big difference. I guess it is part of the cleansing of the bad gut flora.

Gravy I've only done once, but the idea of blended onion added as a thickener seemed to work.

mftnchn Explorer
Incorporating the scd a bit into my meals, love the homemade yogurt. Can tolerate it, and even eat a bit of REAL cheese if I eat a bit of yogurt too.

What I am wondering about it when I eat the almond flour - I felt like I had been beat up -- I was so stiff and sore all around my body, almost like I had done thousands of sit-ups, that kind of achy feeling. Has anyone had any experience with this? or have any thoughts?

Welcome jmd. This strikes me as a *possible* allergy. Can you eat raw whole almonds without problems?

mftnchn Explorer
Recently I discovered Carbohydrate Intolerance.

I have not been aware of it until then... do I have this?

Similar to you, I am intolerant to gluten and lactose quite severely.

Plus those two are not the only ones.

Red meat, fried food especially deep fried, heavy seasoned food, salty food, grains especially rice and potatoes and egg yolks cause bad indigestion so I avoid them completely. Plus the Chinese herb doctor also advised me to take chicken out of my diet which I have for almost half a year now and yes, it has improved my digestive system.

I never liked the food lists mentioned above so I am feeling pretty great although dining out is rather difficult and 99% if the time I am either dissatisfied with meal or fall ill from them.

Plus sparkling drinks are suppose to assist in digestion but they always seem to add on a lump on my stomach and causes more inconvenience down below.

Perhaps I need to be on a specific Carbohydrate free diet?

Oh, and carrots ALWAYS cause abnormal bloating.. They have the possiblity for bloating but with me, it is rather severe. Perhaps I am carbohydrate intolerant.... lol.

IMO the SCD would be worth a try. The lactose problem would fit. The hard to digest foods, grains and potatoes, would also fit. The fact that you are still having a lot of symptoms in spite of gluten-free for some time fits.

Sparkling drinks--do they contain sugar? Does 100% fruit juice (confirmed no sugar added) cause problems?

Carrots are high in fructose, so you could think through the symptoms of fructose intolerance. Search this thread for it, there are some posters who also have fructose intolerance. On another SCD forum, I learned that a subset of people on SCD have trouble with the carrots at first, even though it is an intro food.

The SCD could eliminate quite a bit of stress on your gut, and allow some of the other intolerances to ease over time. You might have to stay pretty basic for awhile, until you find your *safe foods* and stay on that long enough to start to heal.

Perhaps you might find reading BTVC useful??

mftnchn Explorer
My only thought is if you have not been eating a lot of almonds, then maybe you just ate too much at a time. You don't need to eat any nut flours on the SCD, they are simply an option.

Remember, the SCD is not so much about what you eat as what you do NOT eat.

I think this is a possibility. I can't recall where, but I think I also remember reading someone didn't tolerate the Bob's almond flour.

What I'd do is try to get some raw almonds. Maybe even order from Just Almonds, where they don't spray them or anything, they just use steam to pasteurize them. So you can be sure there are not any additives. Maybe Whole Foods or a health food store would have some. Wait about 7-10 days after having any almonds in any form, and then eat a good amount. Track your symptoms for a response that might indicate an allergy or intolerance.

Alternatives could be allergy testing.

If you are fine with the whole almonds, you can grind your own flour. I bought a little hand grinder for about $27, that works pretty good. I actually prefer it over the commercial ground almond flour, which I think makes gummy muffins.

Another issue might be the timing. Elaine suggests waiting on the nuts for a little while. She only adds the nut muffins early on if you have constipation, and then she suggests one a day along in her constipation protocol.

Ms Jan Rookie

Hi there,

I have problems with almond flour - as well as all the other nut flours - even now four months into the diet. But I do perfectly well with whole nuts, except for cashews which I believe tend to be moldy. Also I can't digest carrots. Think they're too sweet or starchy. And since I don't do dairy, nor eggs or sweets, and only chicken as meat, my diet is pretty simple. It consists mainly of: sauteed vegetables like broccoli, cauliflower, and green beans, boiled aspargus, boiled chicken/soup, and a few fruits like grape fruits, kiwi, pineapple, bananas and sometimes strawberries. It took a little while getting used to, but now I truly enjoy these few basic foods, and I feel that the simplicity helps the cleansing and healing. Munching on nuts also helps satisfy the hunger.

Went to my GP yesterday, who can't understand that I have to stay on such a basic diet not to get sick - so now he's referred me to the hospital for a total check. Having already been tested for so many things, I don't know if I'm optimistic, but I'm going to give it a try while certainly keeping the diet to a point ! Any deviation immediately makes me fall ill, so I have no problems sticking to my few foods.

Going out is difficult, but I've learned to always carry nuts and bananas around - and if I must go to a restaurant I tell people ahead of time that I can only have steamed vegetables, then it's no problem.

As to sparkling mineral water, it sometimes helps me when I'm 'poisoned', but genereally speaking I find that it's by far too tough for my stomach. So now I drink almost exclusively flat water.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



jmd3 Contributor
So do you think the almond flour had something else in it?

Interesting about your daughter and sneezing. When I did a dairy experiment awhile back it gave me a runny nose along with fatigue and brain fog.

You can do the SCD without dairy if you prefer. You can culture other things besides milk, like cabbage or coconut milk. Or take probiotic pills or drink kombucha.

I used Bob's Mill brand, made the most delicious things with it, I even coated some zucchini with the almond flour, and fried it in olive oil, yum for sure. But, I just felt so swelled up, just sore and beat up all around my torso.

Nuts are fine, get most of them from whole foods, wegmans, or trader joes. I think I might try to grind my own nuts and make somethings with that. I have to build up to it though, I had such a bad experience with the packaged before.

I want to try and make my own scd fermented cabbage, will try it when I have more time to start it.

The yogurt/probiotics are suppose to help with allergies, and it does so with my daughter, I think I heard one sneeze in the last week or so... and when she doesn't eat the scd yogurt, I can hear 5 sneezes in a row every morning - well I used too.

My order for the mindlinx (probiotic) came in today, I am anxious to try it. I am not sure if anyone has tried it here, it is specifically made for the celiac/autism person. I am going to use it in making of my scd yogurt, and I am hoping for good results.

mftnchn Explorer

I notice that the flour that we can buy is off white in color. Seems to be made of the blanched almonds that are all white/off white. I wonder if it is this part of the processing that is bothering you?

I buy the whole almonds that are brown on the outside, which I grind and use for my baking. I prefer the taste, I find.

mftnchn Explorer

Those reacting to cow's milk might do fine on goat milk yogurt. Many do at least, including me. At least it is worth a try. I drip the yogurt for "cream cheese" for baking.

I just got results from ELISA IGG testing for a food panel. The results went along with my experience. I can't handle the cow's milk products that were tested except for cheddar and swiss cheese. (I'm pondering why those are okay, might have to do with the culturing breaking down and changing some of the proteins). Goat milk tested fine.

pele Rookie
whole foods, wegmans, or trader joes. .

You have wegmans AND trader joes? and whole foods, too? Maybe I should move to where you are...

I have never used Bob's almond flour, but I do use Trader Joe's Almond Meal with no problems.

I know of a person who cannot tolerate almond skin, just blanched almonds.

pele Rookie

Hi Sherry

Glad to see you're still around. It's been a bit quiet.

jmd3 Contributor
You have wegmans AND trader joes? and whole foods, too? Maybe I should move to where you are...

I have never used Bob's almond flour, but I do use Trader Joe's Almond Meal with no problems.

I know of a person who cannot tolerate almond skin, just blanched almonds.

I drive about 2 hours to get to any of those places. :o( But it is worth it., take a big cooler, etc...

In about a week or so, I will try the almond flour again, but a different brand, or to grind my own, I might have a different reaction.

What would be the difference between almond meal, and almond flour. Bob's Mill is a bit gritty and cream color.

mftnchn Explorer

Yes it has. I'm not that easy to get rid of, lol.

I'm having quite a bit more bloating these days. I'm going to go ahead and start eating a bit more raw, as the doctor said I should be able to. Hoping that this will even out when I finish the protozoan treatment, just a few more days now. After that I am going to do a few days of extra probiotics and see if that helps.

pele Rookie
I drive about 2 hours to get to any of those places. :o( But it is worth it., take a big cooler, etc...

In about a week or so, I will try the almond flour again, but a different brand, or to grind my own, I might have a different reaction.

What would be the difference between almond meal, and almond flour. Bob's Mill is a bit gritty and cream color.

The difference is most likely how the almonds are ground. You can actually bake with nut butter instead of nut flour with similar results, but you need to be aware of weight, rather than volume. I make almond butter by putting almonds through the champion juicer. I like to lightly roast them first. A lot of work, but at least that way I know what Im getting.

mftnchn Explorer

Bob's is not as fine as some of the other flours, as I understand. I had a bag of Bob's given to me, but didn't care for it. Mind you, I had been grinding all of my own prior to that. The Digestive Wellness, which many people like, is quite fine. It is also the light color you describe.

Yoekie Apprentice

Hi all!!

I've been reading about it (love the pecanbread site! usually, what's good for kids, is good for me). I've done some reading on the purely chemical structure of nutrition also and am now convinced that simple carbohydrates (both mono and disaccharides) go easier on an inflamed/irritated/leaky gut. So to me it's all about cutting down on complex carbs (together with other measures like peeling and cooking fruits and vegetables). I could call it the simple carb diet. I would give preference to monosaccharides because I am lactose-intolerant (which is a disaccharide) yet it has more possabilities (lactosefree milk, chestnutflour and chickpea flour are disaccharides I would allow).

Yet I wonder, complex carbs are necessary to level out bloodsugar highs and lows (I'm hypogleacemic) so how about that?

And then there's another thing: my stooltest came out fine so I don't have bacterial overgrowth (which is why I won't do the introduction diet). I understand polysaccharides are what gut-bacterias live on but not all are harmful! The good ones are necessary and even reduce the harmful ones!

"When oligosaccharides are consumed, the undigested portion serves as food for the intestinal microflora. Depending on the type of oligosaccharide, different bacterial groups are stimulated or suppressed.

Clinical studies have shown that administering FOS, GOS, or inulin can increase the number of these friendly bacteria in the colon while simultaneously reducing the population of harmful bacteria" (wikipedia)

Is that why you have to eat the scd yoghurt? Is that enough?

GermanMia Newbie

Welcome Yoekie :)

You already did quite some research!

Now - if your stooltest came out negative, there are some things to be considered: First of all, how reliable is that test? I'm in Germany where most regular tests don't say anything about your flora - they don't even really say anything about candida because they consider candida normal to a certain degree which is far too high to be healthy.

Then - what symptoms do you suffer from? There are other things, too, besides gluten or lactose which can cause very different problems.

Your gut consists of small intestine and large intestine. Carbs are digested in the small intestine. The small intestine contains only very few bacteria while the large intestine contains lots of them. If carbs don't get digested in the small intestine, they reach the large intestine where they feed bacteria which normally shouldn't be there - or should be less than they actually are after feeding ;)

But you also have to see which kind of carbs don't get digested in the small intestine and why they cannot get digested.

I'm fructose intolerant, too, which means that I cannot eat things which contain fructose as a monosaccharide nor anything that contains sucrose - like honey, which is legal on the SCD. But I do very well with rice syrup which in fact contains polysaccharides - long chain saccharides - because my system can digest that.

Actually the SCD is the perfect diet to balance hypoglycemia because you have a diet of fruit, vegetables, fat and proteins. The combination of carbs and fibre in fruit and vegetables plus protein (e.g. meat) should calm the bloodsugar down and keep it stable. So if you are sure you can handle fruits and vegetables you'd really give it a try.

Concerning FOS etc. the wiki article is right - except for the fact that FOS and other oligosaccharides can cause huge problems in people who don't digest carbs well and whose large intestines are already troubled.

The SDC yoghurt contains no FOS at all, no inulin etc., but tons of lactobacteria which help to restore the regular flora. Personally I don't think that it's enough to restore a really damaged flora. But you should be really sure whether your flora is damaged or not. Eating SCD yoghurt will never hurt, but taking additional probiotics above the yoghurt when not needed isn't the best idea.

Maybe you should either just find out if you don't digest carbs well - and which carbs cause you trouble, e.g. by breath tests. Or you jump into the diet and give it a try. You won't hurt yourself anyway if you do the SCD because it's simply a diet which is very close to what our bodies are made for - which is not bread ;)

Mia

AliB Enthusiast

Hi all. Been away for a week - went to Cornwall for a break which was good, but ended up sloshing hot oil all over my left hand on Thursday. I tripped down a step I didn't realise was there (unfamiliar surroundings) and I went one way and the pan went the other and took my hand with it. It's ok. Nice blisters and extremely red but still working. I had it in cold water for hours - eventually fell asleep with it in the water and woke up with an extremely white, cold, numb and swollen hand which was a bit frightening, but after warming it up it eventually came back to life! At least it cooled it down! I'm just grateful it mostly missed my fingers and completely missed my face.

Yoekie, I'd like to give you my thoughts on your comments but it is late here now and I need to get to sleep so will respond tomorrow at some point. Night night.

mftnchn Explorer

Yoekie, welcome.

My thought was also what Mia said, the concern is whether you can digest the carbs in the small intestine.

Yoekie Apprentice

Hi all!

Thanks for replying!

What is very strange to me is that what I read about scd (which should be helpful in healing a leaky gut) is a contradiction to what the doctor prescribed me for it. He put me on 'permealine' which is a powder that is intended to stop hyperpermeablity of your gut, yet it's basically fructo-oligosaccharides. And I have to take probiotics as well.

I don't know if I have a problem with carbs (good question!), I have very normal bowelmovements. The reason why I'm looking into scd is because something is obviously weakening my immunesystem and nervoussystem (I have chronic sore throat, feel exhausted, frequent headache, can't stand noise, have rashes, bleeding gums, dizzines, trouble concentrating, feeling depressed) and chadlady mentioned on an other thread that sugar and carbs could do this.

Yet, I'm taking a look at different aspects of life (I have dust allergy and live in a house with lots of mold, my bedroom is so bad I can smell it) or maybe it's all because of depression and insomnia. But food is my number one since I have trouble keeping the weight on and it is a fact that I have/had foodintolerances.

AliB, that sounds like a painful experience! Get well!

Yoekie

AliB Enthusiast
And then there's another thing: my stooltest came out fine so I don't have bacterial overgrowth (which is why I won't do the introduction diet). I understand polysaccharides are what gut-bacterias live on but not all are harmful! The good ones are necessary and even reduce the harmful ones!

"When oligosaccharides are consumed, the undigested portion serves as food for the intestinal microflora. Depending on the type of oligosaccharide, different bacterial groups are stimulated or suppressed.

Clinical studies have shown that administering FOS, GOS, or inulin can increase the number of these friendly bacteria in the colon while simultaneously reducing the population of harmful bacteria" (wikipedia)

Is that why you have to eat the scd yoghurt? Is that enough?

Hi Yoekie. The problem with stooltests is that they really only indicate what is going on in the colon. If your problems are in the upper intestine then it is possible that it wouldn't show up. Certain parasite activity wouldn't necessarily show up either, so I am not sure that Bacterial overgrowth or imbalance can be absolutely ruled out. Plus, of course, what if you have an overgrowth of bacteria or other pathogens that has not been tested for? Even seemingly 'friendly' bacteria like Bifidobacterium has the potential to become pathogenic if it gets out of hand. Candida is a 'friendly' microbe in small doses, mopping up stray undigested carbs in the gut, but of course becomes extremely nasty when it gets the upper hand.

The very fact that you have gut damage does suggest that there is some kind of activity - the gut doesn't get damaged on its own. I noticed that your problems started after a dose of food poisoning. A healthy gut would deal with any potentially pathogenic bacteria - even things like Salmonella, but any gut that is compromised would allow house room for the beggars, so I would deign to suggest that your problems may well have actually started much earlier even though they didn't show up until the poisoning.

Did you have antibiotics before that date, or other prescription drugs? Even things that seem fairly innocuous, like painkillers, can compromise the gut flora and make people more susceptible to pathogenic activity.

Our local Hospitals here in Wales have been giving pre-operative patients probiotics, to try and make them less susceptible to things like E.Coli and C.Diff. Even they now recognise the fact that these little microbes are powerful gut protectors.

The SCD yogurt is very helpful, but what is even more helpful is keeping the bad carbs and processed foods out of the diet. That in itself will help to change the gut flora - if there is nothing for the pathogens - whatever they are - to feed on then they will gradually die back.

I thought the following was an interesting little report showing how the 'Western' lifestyle has such a radically dangerous effect on people's health.

Open Original Shared Link

Yoekie Apprentice

Ali B, you are right. I had a tummy bug only a couple of weeks before, that must have weakened my gut flora.

AliB Enthusiast

The tummy bug may well have made things worse and allowed the Food Poisoning to take hold, but without weakened flora you would have been far less likely to have even had the tummy bug. Although they are often caused by viruses, again the body is usually adept at fighting them off too if it is strong enough, after all, not everyone catches them. Those that don't must have stronger immune systems.

For many, the compromisation starts in childhood. If a mother herself does not have good strong gut flora to pass on to her child, the child will have weakened immune strength. They will then find some foods, like dairy and gluten-based foods difficult to cope with and they too will contribute to the gut flora imbalance.

Many babies are bottle-fed these days - a processed dairy and soya product that is not natural and does not contain the benefits of breast milk. Many babies are also weaned at a very early age - often before 3 months of age when they are given wheat products as a major part of their diet. Wheat in its current form is difficult for many adults to cope with, let alone children.

Childhood illnesses and diseases will often manifest after weaning as damage starts to set in - not necessarily through Celiac but often through gluten intolerance. Much of the 'child-friendly' snacky foods are gluten based and we love our little darlings so much that we want them to have the things they like. And yes, I fell into the same trap myself and I can see my children and grandchildren paying the price with digestive, neurological and mental issues. The other problem is too that because none of us now really knows what it is like to truly be healthy, we view it all as normal. Gas and bloating? Well, everyone gets it so it must be normal. Isn't it??? No it isn't, and should never be viewed as such.

I do wonder if those who have gluten intolerance may perhaps have been perfectly ok with it if it mainly came from barley, rye and oats, but that perhaps the complexity of wheat and the fact that it is in so much foodstuff these days just ends up creating an issue with all gluten.

Back in the days when the only wheat that would have been ingested would have been not only an odd slice of wholemeal bread and an occasional piece of cake but was likely baked with spelt or some other ancient and far less complex wheat grain, it was probably not an issue for the far majority, but these days when wheat is in virtually everything, the sheer quantity of the stuff is almost guaranteed to cause problems. An over-consumption of any kind of food is going to be difficult for the body to cope with, but the fact that it is so highly processed now causes a double whammy.

The people who are realising that gluten-based foods are a problem for them (and dairy too) is rapidly growing every day - so much so that many food outlets are now being forced to provide gluten-free options, and it will sadly continue to grow. This is not something that is going to go away.

It is only by going 'back to basics' food-wise and making sure that we are keeping our diet as free from anything processed as possible that many of us can hope to regain our digestion, and ultimately, our health.

mftnchn Explorer

Yoekie,

Seems like there could be a number of causes of your symptoms. SCD could be helpful, it might be worth a try. I also wonder about an infection of some type or heavy metal toxicity. What about deficiencies due to malabsorption?

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to suek54's topic in Dermatitis Herpetiformis
      6

      Awaiting dermatitis herpetiformis confirmation following biopsy

    2. - suek54 replied to suek54's topic in Dermatitis Herpetiformis
      6

      Awaiting dermatitis herpetiformis confirmation following biopsy

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    4. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

    5. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,257
    • Most Online (within 30 mins)
      7,748

    KariNoMoreGluten
    Newest Member
    KariNoMoreGluten
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @suek54, I have Dermatitis Herpetiformis, too.  I found taking Niacin B3 very helpful in clearing my skin from blisters as well as improving the itchies-without-rash (peripheral neuropathy).  Niacin has been used since the 1950's to improve dermatitis herpetiformis.   I try to balance my iodine intake (which will cause flairs) with Selenium which improves thyroid function.   Interesting Reading: Dermatitis herpetiformis effectively treated with heparin, tetracycline and nicotinamide https://pubmed.ncbi.nlm.nih.gov/10844495/   Experience with selenium used to recover adrenocortical function in patients taking glucocorticosteroids long https://pubmed.ncbi.nlm.nih.gov/24437222/   Two Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide https://pubmed.ncbi.nlm.nih.gov/30390734/   Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Nicotinic acid therapy of dermatitis herpetiformis (1950) https://pubmed.ncbi.nlm.nih.gov/15412276/
    • suek54
      Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me.  The iodine issue is very interesting. I do eat quite a bit of salt because I have Addison's disease and sodium retention is an issue. I also have autoimmune hypothyroidism, not sure how a low iodine diet would play into that? Because of my Addison's I am totally steroid dependent, I take steroids 4 x daily and cannot mount any defence against inflammation. I need to increase my meds for that. Now that I know what is wrong I can do just that if Im having a bad day. Life is very sweet, just so damn complicated sometimes! Hey ho, onwards. Thank you again for your advice.  
    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.