MiriamW

That's fantastic. Best wishes and keep us posted

I'm in the UK and normally buy Plenish or Rude Health brand. I can't stomach coconut cream or oil but milk from a carton is ok. 

Silk brand seems to have far too many ingredients including Sunflower Lecithin and Gellan Gum. 

Coconutmilk (Filtered Water, Coconut Cream), Cane Sugar, Contains 2% or Less Of: Vitamin and Mineral Blend (Calcium Carbonate, Vitamin E Acetate, Vitamin A Palmitate, Vitamin D2, Vitamin B12), Dipotassium Phosphate, Sea Salt, Sunflower Lecithin, Gellan Gum, Ascorbic Acid (Vitamin C To Protect Freshness), Natural Flavor.

I guess we can get lots of calcium from green leafy vegetables but I share your frustration. I'm very much hoping that my gut will calm down at some point and I'll be able to reintroduce at least some more 'normal healthy' foods which are now causing problem. Re plant based milk, sometimes I have plain coconut milk without any additives in it. But that's boring too as I can't add it to coffee or to any cereal... 

Is there any chance that you could have black mould in the house without knowing about it? I often read/hear about stories where people experienced similar health issues like you describe, for years they can't work out what the problem is until they discover hidden mould in their house. It's worth investigating too. 

@Raquel2021I also have Hashimoto. These days if I eat any nut butter I get itchy skin on my right calf, it's strange as it always happens in the same area. I have noticed that I can't tolerate any starch (i.e. tapioca, potato ...) or gums (guar, xanthan etc) which are used in large quantities in gluten-free bread and other products. When I first went on gluten-free diet I was eating these products freely and now I'm convinced they further damaged my gut. Be careful with your gluten-free bread and avoid plant milks that contain gums.   

@Acacia VoynarI have a similar problem. I've been on a very strict gluten free diet, not eating out etc etc for a number of years but my gut lining remains inflamed. I've noticed that any starch makes me feel worse. I don't touch oats, dairy, nuts, seeds, none of the gums (like guar, xantham....) as I now react to all of them. My gastro specialist mentioned that some people can react to fructose, do you eat lots of fruit? I presume you take some good probiotics. 

@Raquel2021...I share your frustration. I've been on a very strict gluten-free diet for 10 years but seem to be getting worse. My gut seems to be more inflamed than ever, I've been loosing hair and most recently, I've started to get pain in my spine (accompanied by a big bruise like mark in the middle of my spine). I've seen my GP but it was a complete waste of time. I don't touch dairy, grains, pulses, nuts or seeds. Occasionally I have a weak black americano, white potatoes and rice cakes. I've been reading the Paleo Approach kindly recommended by @knitty kitty which is amazing but haven't managed to go 100% AIP yet. Dear @knitty kitty, do you have any favourite AIP cookbook that you could recommend to us? Perhaps having some interesting recipes would make the AIP diet a bit easier. 

2 hours ago, knitty kitty said:

My favorite AIP diet book is "The Paleo Approach" by Dr. Sarah Ballantyne.  

https://www.thepaleomom.com/autoimmune-protocol-clinical-trials-and-studies/

Dr. Ballantyne is Celiac herself, and developed the AIP diet for herself and her Celiac kids.  The AIP diet has been scientifically proven to promote intestinal healing.

Hope this helps!  

@knitty kittythank you very much! 

On 11/21/2021 at 9:54 PM, knitty kitty said:

@HectorConvector,

Have you heard of the Low Histamine Diet?  

https://theceliacmd.com/the-low-histamine-diet-what-is-it-and-does-it-work/

I went on the Autoimmune Paleo diet and removed high histamine foods.  

Nuts (and peanuts) and some fish are high in histamine.  Some vegetables like nightshades (tomatoes, potatoes, eggplant and peppers) are high in histamine, too.  

When I eat high histamine foods, I feel agitated and can't sit still.  Is this similar to your feeling that you have too much energy?  

High dose Thiamine with magnesium really helped me.  By flooding the system with thiamine, thiamine can get into the cells easily.  Thiamine provides energy for cells to function and is necessary for the reduction of histamine in the body.  B12 also helps get rid of histamine.  

A B Complex in addition to the multivitamin would ensure you're getting enough B vitamins.  Since B vitamins are water soluble, excess is excreted easily.  

Multivitamins can contain minerals that compete with B vitamins for absorption.  I take my B Complex separately from minerals.  

Hope this helps.

 

@knitty kittyplease could you recommend some good source(s) for the Autoimmune Paleo diet? There are so many different books and websites out there and they vary in information.....hence I was wondering, who is your favourite author or website to go to? Many thanks 

14 hours ago, Scott Adams said:

You can see this towards the end of this article:

 

@Scott Adamsthank you very much, it's great to hear your story. And what a noble idea to set up and run the Celiac.com website/community. You are making a huge difference to so many of us! 

On 7/13/2021 at 7:21 PM, BNGed8 said:

Hello,

As of right now, its like a severe upper back and neck soreness I would describe it as. The occasional arm, chest & leg pain does occur. The only thing that gets me anxious is that it is only on the right side. What put me into the ER last week was pins and needles that turned into my whole right side from neck to my toes to feel numb. I was still able to use all affected muscles/limbs though. After the numbness went away after about 10 minutes, I felt a light burning sensation for awhile. This has since went away and now only have the soreness mentioned prior with some pains that I have had during my original Celiac diagnosis. I do get twitching in the calves, but that only seems to happen when I think about it or stare at it for awhile. It is just hard to feel this way at the age of 26 (male) that used to workout all the time. I keep trying to tell myself it is my Celiac/Deficiencies amplified by Anxiety. But as we all know, anxiety isn't the easiest to turn off.

Thank you for your reply.

@BNGed8I've just come across this old thread and was wondering....how are you getting on? Hope your health has improved! 

On 3/5/2023 at 7:43 PM, Scott Adams said:

Welcome to the forum @Xsmama! 

It is pretty common at the time of diagnosis for you to have additional food intolerance issues, and milk/casein is a very common one. I had about 5 other food intolerances when I found out I had celiac disease, but the good news is that most or all may go away after sufficient time on a gluten-free diet. Once your gut heals you may find that you can tolerate those things again, and for me it took 2-3 years before I added them back (not gluten, of course).

@scott adams Hi Scott. Please can I ask which foods you had to eliminate and later on managed to reintroduce? Many thanks. 

On 2/23/2023 at 12:19 PM, CMCM said:

Here's what happened with my mother.  This was in 1967 when she was 46 almost no doctor knew about celiac disease.  She was unable to keep food down and her weight had plummeted to 89 when she finally met a doctor who instead of telling her it was all in her head, he asked if she had been tested for celiac disease.  He did an endoscopy and saw the evidence...her villi were totally gone and her intestinal walls were in his words, "smooth as a billiard ball".  They put her on a strict gluten-free diet, which was hard in those days as there were no gluten-free foods.  She just ate meat, eggs, fruits, vegetables.  No grains of any kind.  She started to get better, slowly at first, then faster.  She put back her lost weight, and a year later she had a second endoscopy and her villi had regenerated.  She had to eat gluten-free for the rest of her life, but she lived until 95! 

She was always hyper sensitive to accidental exposure, and for that reason she rarely ate in restaurants.  When she did get accidental gluten, she would get violently sick very quickly and be sick for several days.  We did gene testing at the time I did mine in 2009, and discovered that she had TWO copies of the predisposing celiac gene.  That of course meant that I had at least one celiac gene, although I had already learned that through my own test. 

My son also got the gene from me, and a gluten sensitive one from his dad.  His celiac disease first manifested as dermatitis herpetiformis.  No one could figure it out, but through reading I learned of it and we later got it confirmed.  He had gone to dermatologists, who just couldn't seem to recognize what his rashes were.  He went gluten-free, but in the last few years it has shifted from the DH (which he doesn't get) but with any accidental gluten he gets violently sick for a couple of days.   I find this kind of odd, but maybe the DH version develops when you are eating gluten and don't know about the celiac disease. 

Anyway, both my mom and son got better pretty quickly once they went strictly gluten-free.    I have to be gluten-free as well, but my issues extend to dairy and corn as well.  I keep my diet very very simple, very low carb and keto in  nature and I do fine.

@CMCM please can I ask if your mum ended up eating any grains or nuts after her villi had regenerated? And what type of carbs do you eat? I am on a strict gluten-free diet and don't eat dairy but my duodenum isn't healing. You seem to be very strict and diligent with your diet hence I am very interested to find out what else you are avoiding. How about nuts and coffee? Rice and potatoes? Many thanks.  

If all of the above has been ruled out and you are 100% certain that there is no possibility of gluten cross contamination, you might wish to try eliminating dairy products too for a few months to see if it would help. Many coeliacs can't tolerate proteins in dairy products rather than lactose. 

On 1/26/2023 at 3:33 AM, knitty kitty said:

Have you had your Vitamin D level checked?  Supplementing Vitamin D until the level is in the eighties nmol/l is important.  Vitamin D can act like a hormone and regulate inflammation at that level.  

Including healthy fats, Omega Threes, is important to joint health.  Extra Virgin Olive oil, coconut oil, avocado oil are healthy fat options.  Omega Threes are in fatty fish like salmon.  Liver is a source of healthy fats as well as vitamins and minerals.

I take flaxseed oil supplements and can tell the difference by achy joints if I miss a day.  

Hope this helps! 

Hi @knitty kitty I take a tablespoon of organic high lignan linseed oil daily. I was wondering, would you know if it is safe taking it daily long term? 

@Rogol72thanks, it's good to know about Horsetail ! I've just started taking topical Iodine, will see how it goes.  

@Rogol72have you decided which Fulvic acid product you would like to try? Victoria Health have their own product (Fulvic Elixir) which looks good too and has lots of great reviews. 

@Liquid lunchat the end of the day you know the best what feels right for you. I was thinking more of those that haven't tried it yet and thought it might be sensible to start  gently....

@Liquid lunchyes I personally use a neat drop of lavender oil too when needed but for some people it can be too strong. I just thought that your 'recipe' for healing skin oil sounded excessive - I would say a few drops of essential oil rather than 2 parts.... 

On 1/11/2023 at 5:27 PM, LaLeoLoca said:

Well, lots of anti juicers as it turns out! But honestly it has been great for me. It’s mostly vegetables and it’s helping me get nutrients in a way my body can handle. It’s not my long term plan, but for however long I need it, it has been very positive. 

 I’m a lot sicker than people can see, and MECFS and POTS are parts of that. I just can’t digest much at all and feel terrible digesting anything. Homemade juice has been excellent and makes me feel a little better. Better juiced veggies than zero veggies. This week I’m doing carrots and beets. Made in the vitamix, then strained. My poop has been better since starting; too much fiber  now is kryptonite.

Thanks for the opinions, but juicing has been great for me.

Juicing has helped me too but carrots and beetroot have too much sugar, not the best combination for inflammation. I normally use lots of cucumber, some celery, only a little bit of beetroot as it is too strong, one carrot and a lot of parsley (or kale, lettuce...). I don't use Vitamix as that is 'blending', I use a proper juicer which separates the veggie pulp and then you don't have to strain anything. I was told a long time ago to add a drop of olive oil and a vitamin C to slow down oxidation and drink very slowly for maximum effect. Keep each sip in your mouth for a few seconds before swallowing. 

On 1/9/2023 at 11:41 PM, Liquid lunch said:

@Ariettiim sure this mixture will help..

1 part neem essential oil

2 parts tea tree essential oil

3 parts olive oil

It’ll get rid of those in no time, make sure the essential oils are not synthetic.

@Liquid lunchthe 2 parts of tea tree essential oil sound very strong to me. So if you have a teaspoon of neem oil would you add 2 teaspoons of tea tree oil? Essential oils like tea tree are normally measured in drops.

@trentsall autoimmune illnesses are linked and one can never dig deep enough... So far I haven't managed to pin point what causes my hair loss unfortunately but my guess is, it's to do with my gut issues. Histamine intolerance is part of that problem too. 

Hi @Rogol72, thank you for this information. I've heard of Fulvic minerals and probiotics but haven't tried them so far. I've only had probiotics from Just Thrive which are spore based, I guess it might be a similar principal? All the products listed in your email sound great and your plan to supplement with trace minerals and micronutrients sounds very sensible. Who knows, that might be the key to recovery. Apparently you are supposed to start with very small doses and take them only with filtered water:   

"There is some emerging evidence that water quality is drastically important when taking these types of minerals and probiotics since they don’t react well with chlorine and *might* create a harmful substance when combined with chlorinated water."

I look forward to listening to the holistic doctor as soon as possible and thank you again for recommending Dr Robert Pastore, I've been enjoying his podcasts, they are really informative. I just wish I could be in a position to get all the tests done that he offers in his clinic  

Thank you @knitty kitty, that's most helpful and the link is very informative!

Last month I tried taking Thyroid Complex by Nutri Advanced (first 3 or 4 days just one tablet a day and then half a tablet a day for less than a week). Soon after starting the supplement my eyes were all itchy and achy, but I didn't link it to the supplement at first. Then on day 5 the skin all around my eyes changed pigment to dark brown!!! I didn't know what was happening but eventually figured our that it had to be the supplement as I hadn't changed anything else in my diet. I stopped taking it immediately but the discoloration hasn't gone away. Would anyone have any idea what could have caused it? Could it be iodine or vitamin A? @Wheatwackedyou are clued up on liver and chemistry, do you have any thoughts?