Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,906
    • Most Online (within 30 mins)
      7,748

    wellthatsfun
    Newest Member
    wellthatsfun
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • MelissaClinPsyD
      Thank you so much for your response kitty that is helpful to hold in mind. I am also doing a review on lived experiences of coeliac disease so your blog would be incredibly valuable for me to review, please can I have the link to it?
    • knitty kitty
      @Shining My Light, Yes, celiac is spelled differently in Great Britain.  Yes, please do consider us as part of your support circle.   I had a serious Vitamin D deficiency, too.  I learned Vitamin D acts as a hormone when at levels between 78-100 nmol/L.  Mine was in the single digits.  I had been in declining health for years without answers.  I had developed hormone problems and clinical depression among other symptoms.  I corrected my Vitamin D deficiency with high doses to get my level up quickly.  Yes, it's safe.  Here's some studies done on high dose Vitamin D. https://pubmed.ncbi.nlm.nih.gov/34737019/ https://pubmed.ncbi.nlm.nih.gov/39125420/ https://pubmed.ncbi.nlm.nih.gov/35470105/ https://pubmed.ncbi.nlm.nih.gov/30611908/ My Vitamin D deficiency was just the tip of the deficiency iceberg.  I was deficient in the B vitamins, too.  Celiac Malabsorption affects all the vitamins and minerals, not just one.  Here are some articles about how the B vitamins and even Vitamin D help lower anxiety... https://pubmed.ncbi.nlm.nih.gov/33848753/ https://pubmed.ncbi.nlm.nih.gov/35156551/ https://pubmed.ncbi.nlm.nih.gov/35851507/ https://pubmed.ncbi.nlm.nih.gov/35851507/ https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/
    • Shining My Light
      @trents I’m pretty sure what I’m left with when separating celiac to other causes is my 10% being a virus. The one I had about 3 weeks before taking this TTG test. Everything I’ve read says type 1 diabetes, rheumatoid arthritis, hepatitis and some viruses are what could cause the elevation. The other blood tests I had I can compare things against.  I’m going to give your article a thorough read. My support in my circle is very small at the moment.  @knitty kitty I think before EGD I would like to do the DNA test. I’m going to start keeping a better journal also.  I’ve read a crazy amount of these “articles” - these two I’ve not seen. Some articles spell celiac differently. Thank you for sharing! I’m gonna dive into those.   I started seeing the functional medicine doctors from fluctuations in my hormones and major anxiety. Recently I realize it’s mostly health anxiety also so this is more challenging to depict real from imaginary thus all the research and the back and forth. I know anxiety to be a common symptom in perimenopause. I’ve fought it my whole life however. Likely due to lots of different trauma but seeing her was my last ditch effort to try something to avoid SSRIs, HRT, etc. She told me not to blame everything on my hormones when there could be an underlying problem, so she ran some tests to see if anything stood out. The TGG tests stood out.  I do find it very interesting now that I think about it that I don’t desire bread, pasta and pizza. Sometimes yes, but mostly no. I guess I didn’t give that much thought. Also didn’t realize that those foods do contain more gluten than the tortillas and cake/baked goods. About 3 months ago I started ordering meal kits to make dinner easier. I went back over the menus that I picked. I have probably had bread and pasta a hand full of times over the last couple months prior to having that blood test. We used to get pizza every Friday and stopped doing that also. I’m all fairness about 2 months leading up to these blood tests I had less gluten containing foods than I thought.    I’ve been praying for wisdom. Thankful to find some counsel from people who I believe have dove harder into this than most doctors have. Thanks for all the advice. It’s appreciated more than you know. 💕
    • Alibu
      @knitty kitty My whole family has migraines and I started getting them at age 19, so I'm not sure mine are related to gluten, although I do feel like obviously the more inflamed my whole system is, the more likely I am to suffer from more of these things.
    • knitty kitty
      @Alibu, Just wanted to add... Migraines can be caused by thiamine insufficiency.  I used to have them, regularly, but haven't since supplementing with thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and Magnesium Threonate.  These forms get into the brain easily and really improve migraines.  I do still get Ophthalmic migraines which are triggered by computer screens.  It's permanent damage from nutritional deficiencies.  An Erythrocyte Transketolace test is a more accurate test for sufficient thiamine. Keep us posted on your progress!
×
×
  • Create New...