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

New: Need Advice On Coffee And B12


Ms Jan

Recommended Posts

Ms Jan Rookie

I am new to all of this and have a few questions that I hope someone in this amazingly well informed forum can help me with ...

After a life time of health problems, such as arthritis, fatigue, weak immune system etc, and five years of debilitating headaches and digestive problems (would throw up 72 hrs at a time, even boiled water), I was finally diagnosed celiac/gluten intolerant by elimination diet three months ago.

Much research, too much trial and error, and no help from the established medical profession, had led me to a dr in alternative medicines who in 2006 had diagnosed me with leaky gut/candida, and the treatment and diet for these did offer some relief. But I still had too many problems and knew something else had to be wrong, so luckily I found this wonderful American Health Practitioner who immediately pointed to Celiac Disease (still can't believe that no doctor ever before mentioned the possibility to me!! - I'm from Scandinavia where celiac/leaky gut/candida are still like foreign concepts to most).

The gluten free diet immediately helped. But I still got 'poisoned' whenever I had sweets or non-gluten grains, so a few weeks ago I put myself on the SCD diet modified to also fight candida, which means I've cut out also all dairy/sugar. And finally, I think I've hit on the right thing - I feel better than in years !! (finally I can stay out of bed for more than four days in a row !!)

Yet, I still struggle with two things: B12 and Coffee.

Trying to replenish my resources, I take among other vitamins a sub-lingual B12 (methylcobalamin). However, it contains artificial sweetener as well as natural cherry flavour, and though I've so far not reacted badly to them, I'm really worried if they'll ignite the candida again or undermine the SCD diet. I haven't been able to identify any sub-lingual B12 (methylcobalamin) without at leat the cherry flavour, so I wondered if anyone here knows of a brand of very pure SCD compliant non-sweet brand ?

And what does 'natural cherry flavour' actually contain ?

As to coffee, it is the one thing I so far haven't been able to give up on. I drink it black, unflavoured, no sugar, and I tolerate small amounts with no problem. However, I always get into drinking too much of it, even though I intersperse with cups of good herbal teas. I have tried many times to give up the coffee, but just don't seem able to - I'm a novelist, and I can't write without the coffee. So since I go desperate when I don't write, well I end up taking some more ... considering after all, it's not cocaine or even worse ... But I do worry whether it's actually standing in the way of my healing properly. I have read so many conflicting reports on coffee that I really don't know what to make of it. But does anyone here know, or have personal experiences with, how bad coffee actually is for the body - and if one can overcome Celiac, leaky gut and candida without giving it up?

And any other comment or advice on how to deal with this coffee craving would also be appreciated?

Ms Jan


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



Celiac.com Sponsor (A8-M):



chatycady Explorer

Have you asked your Dr. for B-12 shots? I give my self a shot once a month now. It's not too hard to do. Also, I love coffee too. I drink Starbucks decaf. And I drink it pretty strong. I don't have any reactions to it, but maybe I"m healing slower because of it. I only drink two mugs of it each day. Plus I make the 24 hour yogurt and eat lots of it for the good bacteria. Also I eat the Dry Curd Cottage cheese with the good enzymes in it.

Don't beat yourself up. You stated earlier that you never felt better. Me too. The SCDiet was sent directly from heaven above! Enjoy life and try not to focus too much on this disease.

Ms Jan Rookie

Thanks - B-12 shots sounds like a good idea. So far I have only emergency health coverage here in the US, but I'll see if I can work out something with a dr locally.

And decaf coffee might definately improve the coffee situation. I had read somewhere that decaf had gluten in it, which is why I didn't dare drink it. But I gather if you have no problem with it, it must be gluten-free. Do you know if this only goes for the Starbucks decaf, or for other brands as well ?

Totally agree that the SCD is like the gift one has prayed for - I don't do dairy just yet, but do take a lot of probiotics. And yes, I surely enjoy very much my 'new' improved health situation. Guess I cherish it so much that it has me overly worried about any potential for set-backs. :rolleyes:

thanks again ...

RiceGuy Collaborator

As far as I know, candida doesn't feed off of sugar-alcohols, so I'd think the sublingual is ok in that regard. The natural cherry flavor is likely an extract, and I'd doubt there's much if any sugar in it. You'd probably get more sugar from a number of veggies.

Since you haven't mentioned taking any anti-candida supplements, I'll recommend Open Original Shared Link. Start out with one capsule per day, and work up to the label recommendation. Other products may work for you as well, such as Open Original Shared Link. Such products should be available in your local health food store.

About the coffee, I do know that caffeine is a diuretic, which causes nutrient losses, especially minerals. This is definitely something to avoid, as malabsorption is one of the main problems celiac disease causes.

AliB Enthusiast

Coffee is a bell. Pavlov's Dog and all that. Certain things trigger certain actions - like some people have to have a cigarette with a cup of coffee, or they can't have a cup of tea without a biscuit or cookie, or they see an advert on the TV for crisps and have to go and get a packet.

It is just a matter of retraining the mind. Its like if you decide to cut out sugar in your tea. You gradually cut down over the course of a week or so until you are able to drink it without then after 2 weeks if someone gave you tea with sugar you'd spit it out.

The writing is the bell, the trigger - you HAVE to have a coffee when you write. It helps clear the mind. Hmm, that is like saying, I will make the dog bark just so I can have the relief of stopping it. It is a drug, and a drug keeps you hooked in a never-ending cycle. The coffee gives you an adrenaline punch, but then it lets you down so you have to have another one, and so on. But although it initially gives a punch, it is also contributing to the inevitable crash that follows.

Most of us on the SCD have found that although we have gone through the 'withdrawal' syndrome and craved whatever our fix is, within a few days - a week at the most we no longer need it. That is why Elaine called her book and the website 'breaking the vicious cycle'. Food and drink can be very habit-forming, and foods that give us a drug boost are even more so. We don't control it - it controls us. That is why people will carry on eating or drinking certain things even when they know it affects them.

Fortunately I have never liked coffee very much - ugh, couldn't stand the 'old stale fag breath' that it left behind! :P

hippiegirl2001 Newbie

Re: B12. I use a brand of Methylcobalamin sublingual made by Natural Factors which has no artificial sweetners, or gluten (I contacted them). 1000 mg. I don't know why they have to put sweeteners or flavorings in these products as there are some with 5000 mg I would take if I could but I can't use anything with the sweetners, sorbitol, manitol, etc... I would take about 10-12 of the Natural Factors tabs a day plus in a multi, ate liver, whatever to try to boost my B12 but was never so tired in my life.

I started on weekly B12 shots and it took about 5 weeks before one day I said, I feel normal! My MD's didn't think I needed the shots even though I told them that I took the vitamins consistently. I don't agree. Some people out there lack the intrinsic factor to process B12 by mouth, so they need weekly shots. I haven't been tested for that, I don't know if I have that (pernicious anemia). But I can't go a whole month without a shot and that is what the MD's want me to do. Some gyms, & health food stores (like some Whole Food Markets) have MD's who give B12 shots there monthly.

I don't know if the Natural Factors tabs fit in with the SCD diet . Watch out for some vitamins by Freeda. I take their multi, but ordered other vitamins not knowing most have the artificial sweeteners. Jarrow also.

Hope you get better soon!

Patty

Ms Jan Rookie

Hi Everyone,

Thanks for the support and good advices !

Yes, I think there's no doubt that I'll have to wean myself from the coffee. I'll try to do it through changing into caffeine free first, and then see if I can find another more healthy 'bell' that can bring me into a good writing mode ...

Know you're right, AliB, that it's a lot about habit - some habits are just more difficult to break than others :(

Hippiegirl:

Sounds good with the sublingual B12 from Natural Factors, will try those. And then see, if shots will be necessary or not. (It would be great if I can just arrange to have the shots at the local health food store - will look into that).

Riceguy:

I'm already on a number of natural anti-fungals, incl. oregano oil, olive leaf extract and golden seal, as well as eating lots of virgin coconut oil - and I do feel it keeps the candida at bay. However, I've seen the caprylic acid capsules mentionned many times, so perhaps I shall try to work them into my regime at some point. couldn't open the links in your response, but do you know of an SCD compliant brand?

thanks again ...


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

I don't know why you couldn't open the link. It works fine for me. Perhaps your browser is preventing it for some reason. If you have a popup blocker, that might be doing it, since all links on the forum open in a new browser window. Try copying the link, and pasting it into the location bar. Here is the plain link: Open Original Shared Link

There are other brands of caprylic acid capsules though, so I guess you could take a look at your local health food store and see what they have. Anyway, here's what the label says, for the one I linked to:

Supplement Facts

Serving Size 6

Servings Per Container 16

Amount Per Serving

Calcium  (As Calcium Caprylate)..................................162 Mg - 16%

Magnesium  (As Magnesium Caprylate)...............................82 Mg - 21%

Zinc  (As Zinc Caprylate)..........................................7 Mg - 47%

Caprylic Acid  (From Calcium, Magnesium And Zinc Caprylates)....2163 Mg - N/A*

* Daily value not established

Directions:

As a dietary supplement, take two (2) to three (3) capsules two times daily, preferably with meals.

Other Ingredients:

Gelatin, rice flour, magnesium stearate, purified water.

Does Not Contain:

Yeast, Corn, Wheat, Sugar, Salt, Soy, Citrus, Fish, Preservatives, Artificial Colors or Flavors Added.

Coconut oil is good, though the amount of caprylic acid in it will vary from brand to brand. You'd also need to make sure to get enough of it. My rough calculation suggests that one tablespoon of coconut oil should have a typical caprylic acid content of about 650mg. Incidentally, if you want the highest quality, and the very best tasting coconut oil available, go to www.coconutoil-online.com. They have a sample size, so you can find out just how good it is. Of the many brands I've tried, none of them even come close to it! They also have a wealth of information on the site, so it's worth checking out just for that alone.

Lovey25 Rookie

Hello All!!

Wow does this discussion hit home for me!

After being diagnosed with Hashimoto's Thyroiditis, I got on Dr. Crook's "Yeast Connection" diet, which is very similar to the SCD. I've been on that diet for a year. Because Hashimoto's is autoimmune (the most terrible thing), I have gotten much better on the diet but not completey healed from the Candida. I have a burning hatred for Candida. It has ruined my life in so many respects. But, I'll keep things positive here... :D

Anywhoo... then a few months ago, I came across the link between gluten intolerance and Hashimoto's and a big, glowing lightbulb went off for me. It was the missing link. Now I do The Yeast Connection diet, gluten-free, dairy-free, and about 85% raw.

The thing with Candida and Celiac or gluten-intolerance is that they work together and often mimic each other in the structural sense, so if you're not ingesting the one, you can ingest the other and still have the problem. Basically, they're working in unison to kill us. <_<

I follow the diet very strictly and even after a year of anti-Candida, I'm still infected. I've only been dairy/gluten-free for about two and a half months, so I know in time that will make things much better.

pele Rookie

Hi Jan

Very weak black coffee is allowed in the SCD.

rinne Apprentice

Freeda Vitamins are SCD approved, they are available on-line. :)

Ms Jan Rookie

Just wish to thank everyone for advice. :)

This was really helpful. I'm working on it ...

Jan

hippiegirl2001 Newbie
Freeda Vitamins are SCD approved, they are available on-line. :)

Freeda sublingual B12 has artificial sweeteners. I bought some and had to give it away. They don't have the ingredient list on their website unfortunately but it is in their catalog which they can send by mail. I don't know if their SCD vites have artificial sweeteners.

Ms Jan Rookie
Freeda sublingual B12 has artificial sweeteners. I bought some and had to give it away. They don't have the ingredient list on their website unfortunately but it is in their catalog which they can send by mail. I don't know if their SCD vites have artificial sweeteners.

Hey there Hippiegirl,

Thanks for the info. I'll watch out for that.

Jan

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. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    2. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    3. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

    4. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

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

    • Total Members
      133,411
    • Most Online (within 30 mins)
      7,748

    EBeloved
    Newest Member
    EBeloved
    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

    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
    • Wheatwacked
      Hello @catnapt, That's so true.  Every person with Celiac Disease has different symptoms.  There are over 200 that it mimics.  Too many still believe that it is only a childhood disease you outgrow.  Or it's psychosomatic or simply a fad.  Idiots.  It's easy to get angry at all of them.   You just have to pick at the answers until you find the ones that work for you.  I too suffer from not being able to take the drugs that work for "everyone else".  SSRIs make me twitch ane feel like toothpicks are holding my eye open, ARBs cripple me.  Statins cause me intestinal Psuedo Obstruction.  Espresso puts me to sleep.  I counted 19 different symptoms that improved from GFD and dealing with my nutritional defecits.  I couldn't breath through my mouth until I started GFD at 64 years old.   My son was born with celiac disease, biopsy diagnosed at weaning.   So why are we the one-percenters.  Why, after being silent for so long, does it suddenly flare? There is the possibility that you have both Celiac Disease and Non Celiac Gluten Sensitivity.  NCGS was not established as a diagnosis until 1980.  NCGS is diagnost by first elimating Celiac Disease as the cause, and showing improvement on GFD.  Nothing says you can't have symptoms from both.  Wheatbelly: Total Nutrition by Dr. Davis was helpful to me. We come to the forum to share what we've learned in dealing with our own symptoms.  Maybe this will help someone. Speaking of which if you don't mind; what is your 25(OH)D vitamin D blood level?  You mentioned a mysterious Calcium issue. Vitamin D, Calcium and Iodine are closely interactive. It is not uncommon for postmenopausal women to have insufficient intake of Iodine.   (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals; often used to plan nutritionally adequate diets for individuals You are a one-percenter.  You may need higher intake of some essential nutrient supplements to speed up repairing the damages.
×
×
  • 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.