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Hormone Balancing


CR5442

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CR5442 Contributor

Having been gluten free now for about 4-5 months I've started to get a real handle on the diet side of things and rarely slip up. My big bugbear now is hormones. I clearly have and have had a problem with hormone balance since puberty! I'm on a herbal prescription which is doing wonders in some areas, like tolerance and hot flashes, night sweats, sleeping and digestion but I am now developing other symptoms... These might be just the herbs slowly moving things around so the hormones are in the right place but I'm dreading that things might stay the way they are right now! I have developed water retention in my lower body and breasts, so everything below the waist and boobs! Whilst my boobs were getting very saggy (TMI!) and look a lot better now, I really am not appreciating carrying around the extra 3-4lbs of water! I know that the herbal prescription will take a while to settle me down - up to 3-6 months for chronic hormone imbalance. Does anyone have any experience of hormone balancing using herbs and how long does it take to settle down. The wierdest thing is that I feel like I have pmt in the first two weeks of the month this time round... really hoping this will subside in the next two weeks! (Bea, this is one for you!).


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navigator Apprentice

I'm 54 and have had hot flushes, night sweats, water retention for about 10 years. I tried various remedies (black cahoosh, red clover, menopace, flash fighters etc) but didn't have any success. My hot flushes were really bad - my whole body went bright pink and even my scalp sweated. I could take 6 in an hour. I've been wearing a ladycare magnet 24/7 for over a month now and my hot flushes and night sweats have now stopped. I know that it may be a coincidence but I'm willing to believe that the magnet works and will continue wearing it 24/7. It was

maximoo Enthusiast

How old are you? Perimenopause can begin in the 30's.

CR5442 Contributor

Thanks for your replies. That's what I was thinking - re peri-menopause. It is quite possible. The herbs I have been given are balancing herbs. I'm just thinking that i need to be patient and let them do their work. Dong Quai takes about 3-6 months to change the hormone balance to something more comfortable. Guess I'll have to keep taking dandelion tea to get rid of the extra water!

pricklypear1971 Community Regular

Have you tried natural progesterone cream?

CR5442 Contributor

Have you tried natural progesterone cream?

Yes I have before but it did no good at all. My problem is dropping Oestrogen levels I think. Chronic stress and tiredness since having my second child and my husband leaving hasn't helped! Certainly the stress and tiredness are much better. The hot flashes are gone on the herbs and my tolerance levels are much better, but it's like the whole hormone thing that I'm used to (probably too much oestrogen in the end of the cycle) has been turned on its head... so really I am now getting rid of the oestrogen at the right time of the month. I'm in the middle of my cycle and praying that the puffiness will subside over the next couple of days. Hormones are SOOO tricky!

pricklypear1971 Community Regular

Well, if you have too much estrogen a little progesterone wouldn't hurt to oppose it.

I've had times when pc helps tremendously and others not as much. Make sure you use the good stuff and give it a whirl.

Sometimes it takes a few months to see the effects.


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CR5442 Contributor

Thanks PricklyPear. I just emailed my herbalist (he's a third year on my course at Uni and knows a lot more than me) and he said that at the moment the hormones will be fluctuating trying to find the correct level, to persevere and try to rest a bit more! Am feeling a bit better this afternoon so will keep on the dandelion for the time being.

pricklypear1971 Community Regular

Thanks PricklyPear. I just emailed my herbalist (he's a third year on my course at Uni and knows a lot more than me) and he said that at the moment the hormones will be fluctuating trying to find the correct level, to persevere and try to rest a bit more! Am feeling a bit better this afternoon so will keep on the dandelion for the time being.

Yes, it seems EVERYTHING is trying to balance, coming off gluten.

CR5442 Contributor

I know. It's nuts isn't it! Hopefully I'll be able to come back with a good report in a week or so time.

YoloGx Rookie

Hi Caroline,

Sorry to hear you are having so much trouble! How awful to get the super bloat!

It would be nice to know which herbs you are taking and for how long--and what your diet is like besides being off gluten.

Not being able to see you I don't know, however I suspect you might be reacting to something. I for instance cannot

tolerate Dong Quai, it being part of the carrot family that I am allergic to (although parsley for me is fine, go figure!). You could also be reacting to some food(s) too.

I reiterate about the herbs, its often best to only take them for 10 days and then go off them for another 7, perhaps substituting other herbs in for the ones you are off if you really need them continuously. This is something you should talk to your herbalist about if at all possible.

Its also possible you need something to stimulate your liver and digestion, like fresh lemon juice or unfiltered apple cider vinegar. Other good things for your gut digestion are real yogurt (I like the home-made 24 hour yogurt since all the lactose is then fermented out of it--much cheaper this way too) and fermented cabbage (which you can also make yourself--see the SCD thread).

Consider too healing your traumatized villi with bromelain and nattokinase or eating natto (blech!-but maybe you could figure out a way around the nasty taste??).

Despite the bad rap some people have for mucilage, I think when we have an irritated, degraded intestinal lining due to celiac, things like marshmallow root are very healing and soothing to the villi etc.

Blended raw vegetables (like celery, parsley, lettuce) can also go a long way towards giving you the nutrients and the easy bulk you need. If you get too cold, eat or drink something warming afterwards.

Fresh ground flax seed with a pinch of apple pectin will also go a long ways towards aiding your elimination, which can help get rid of excess water.

Cleavers are a wonderful herb to use to clean out the possibly overtaxed lymphatic system. Its also great for the kidneys and bladder by the way.

I agree--the progesterone cream is a good idea at this time--maybe. Please let us know your approximate age. Am assuming you are taking vitex??

Good luck! must rush off now...

Bea

YoloGx Rookie

Hi Caroline,

Hope today you are feeling a little less bloated. I just wanted to add that nettles might be a good addition to the dandelion and marshmallow root. The nettles are good for a lot of conditions and specifically good for the liver, skin, excess mucous and detoxing gently. I have read someplace or other they are good for female complaints too.

In addition, I just recently purchased some books on acupressure. There is a lot there on the hormonal system, as well as others including the liver and kidneys, head and body aches et al. Have you looked into it? It might also be a great adjunct to your healing practice in the future. For now however it is likely to help you through this period of adjustment.

I also found a good enzyme formula made by Jarrow called "Jarro-Zymes Plus". It has Porcine Pancreatic Enzymes which are touted as being more effective than the vegetarian kind. It also has Alpha Galactoside which claims to be good for digesting difficult things like starches and beans. I am finding this to be a huge help eating a more vegetarian diet (read more beans and yogurt and brown rice and the requisite raw blended veggies as well as the occasional fish) since I am now off regular meat given that I need to clean out my liver and gall bladder. Seems you are too as I recall--so its possible digestive enzymes like this could really help. These enzymes by Jarrow are gluten, egg, fish, lactose, peanut and tree nut free. .

Meanwhile, I hope you are happily preparing for your holiday festivities with family and friends, if that is your bent.

Bea

CR5442 Contributor

Hi Caroline,

Hope today you are feeling a little less bloated. I just wanted to add that nettles might be a good addition to the dandelion and marshmallow root. The nettles are good for a lot of conditions and specifically good for the liver, skin, excess mucous and detoxing gently. I have read someplace or other they are good for female complaints too.

In addition, I just recently purchased some books on acupressure. There is a lot there on the hormonal system, as well as others including the liver and kidneys, head and body aches et al. Have you looked into it? It might also be a great adjunct to your healing practice in the future. For now however it is likely to help you through this period of adjustment.

I also found a good enzyme formula made by Jarrow called "Jarro-Zymes Plus". It has Porcine Pancreatic Enzymes which are touted as being more effective than the vegetarian kind. It also has Alpha Galactoside which claims to be good for digesting difficult things like starches and beans. I am finding this to be a huge help eating a more vegetarian diet (read more beans and yogurt and brown rice and the requisite raw blended veggies as well as the occasional fish) since I am now off regular meat given that I need to clean out my liver and gall bladder. Seems you are too as I recall--so its possible digestive enzymes like this could really help. These enzymes by Jarrow are gluten, egg, fish, lactose, peanut and tree nut free. .

Meanwhile, I hope you are happily preparing for your holiday festivities with family and friends, if that is your bent.

Bea

Hi Bea, thanks so much for this. I touched on nettle the other day and remembered how good a diurectic it was for me. I did Dandelion the day before last and had the most awful night's sleep ever, though that might have been down to the hormones being all over the shop at the moment. The water weight is still there... though not increasing (touch wood!). I'm going to add some yoghurt in to the diet as well. I do take probiotics and one milk thistle tab at night. Last night slept like the proverbial log! Interesting what you said about acupressure too. That is something I used a few times though I suspect I'm not getting the points quite right. The underlying issue is that I had oestrogen in my system at the wrong time of the month, now it has moved to the right time of the month but is bringing water with it. I still have the water and it is day 16. I'm hoping the progesterone in my cycle will kick in soon to get rid of the water... (natural diuretic). Hope you and yours have a wonderful Christmas too!

CR5442 Contributor

Hope you all have had a wonderful Christmas. Well I suspect the problems have been down to a horrid cold/cough/flu type thing that my children then I came down with over Christmas. I took some Solgar vits yesterday with a healthy dose of Bs especially B6 and half of the water has come off... so will keep taking. Bea, I'm also taking the cider vinegar again like you suggested. It doesn't seem to be hurting my stomach like it used to so will keep on that too.

Hope all eating and festivities went safely to plan for you all!

Reba32 Rookie

how is your diet, other than being gluten free? Do you eat a lot of manufactured and processed foods? Or do you eat whole, natural foods? If you've just replaced gluteny foods with the manufactured gluten free equivalents, this could contribute to weight gain, water retention, and hormonal imbalance. There is *very little* nutrition, if any, in manufactured (gluten free) foods. Added sugars and fructoses (HFCS, agave, honey, other tree syrups etc) also can have negative effect on hormone levels. Sugar causes insulin spikes/crashes, and insulin is a hormone which can effect every other hormone creating organ in your system, from thyroid to ovaries.

A lot of women have very good luck with a low carb, whole foods diet in regulating hormone levels. Lots of healthy fats (Omega 3s from cold water fish, flax, and chia, avocado, nicely marbled meats, olive oil, coconut oil, etc), moderate servings of proteins 3 times a day, and lower carbohydrate fruits and veggies. Eat 5 to 6 times per day rather than 2 or 3 times, to keep insulin levels in check, and don't starve yourself.

YoloGx Rookie

Hi Caroline,

Hope you are starting to feel better from the flu!

Reba is entirely correct--often eating less or no sugar and no pre-packaged anything helps the hormones and everything else. Back to the basics is the best healthy food there is usually.

Also be careful of cross contamination. If you have been getting some trace gluten in your system it can set you up for both water retention and getting ill. I am always washing my hands even at home before I eat or put my hands to my face to make sure I don't get CC'd. It makes a big difference.

Well its a good time to cozy up. Hope you are getting some good rest in.

I had a very pleasant Christmas with my boyfriend and an old friend.

It seems I am turning the corner with this gallbadder condition. I am still allergic to lemons! I was consuming lots to help flush out my liver... sheesh! Now without them last night I tolerated eating a bit of (skinless) chicken. Hurrah! The dandelion root and marshmallow root with either the Oregon grape root or barberry root or the nettles is still working for me....

I am also considering trying out some homeopathics: Chilidonium majus to be specific and cholestronium.

Bea

CR5442 Contributor

how is your diet, other than being gluten free? Do you eat a lot of manufactured and processed foods? Or do you eat whole, natural foods? If you've just replaced gluteny foods with the manufactured gluten free equivalents, this could contribute to weight gain, water retention, and hormonal imbalance. There is *very little* nutrition, if any, in manufactured (gluten free) foods. Added sugars and fructoses (HFCS, agave, honey, other tree syrups etc) also can have negative effect on hormone levels. Sugar causes insulin spikes/crashes, and insulin is a hormone which can effect every other hormone creating organ in your system, from thyroid to ovaries.

A lot of women have very good luck with a low carb, whole foods diet in regulating hormone levels. Lots of healthy fats (Omega 3s from cold water fish, flax, and chia, avocado, nicely marbled meats, olive oil, coconut oil, etc), moderate servings of proteins 3 times a day, and lower carbohydrate fruits and veggies. Eat 5 to 6 times per day rather than 2 or 3 times, to keep insulin levels in check, and don't starve yourself.

Hi Reba, I'm pretty low carb in what I eat. Mostly meat, some fish, some eggs and vegetables... though hardly any potatoes, butternut etc. Sometimes I'll have some seeded bread, but not that often. I agree totally that the processed foods can make things worse so I do tend to steer clear. I have to say it is pretty tricky being gluten, coconut, dairy (mostly apart from some cheese), processed food, and fruit free (I sometimes have banana but my acupuncturist says I need to stay on warm foods, which fresh fruit generally isn't). I don't tolerate flax very well and the avocados we get here in sunny UK are pretty dreadful. I'm intolerant of coconut oil and a few other things. I find though that if I'm feeling puffy a meal or two worth of fasting sometimes gets things sorted. I don't really suffer luckily from low blood sugar because of the food diet I follow.

CR5442 Contributor

Hi Caroline,

Hope you are starting to feel better from the flu!

Reba is entirely correct--often eating less or no sugar and no pre-packaged anything helps the hormones and everything else. Back to the basics is the best healthy food there is usually.

Also be careful of cross contamination. If you have been getting some trace gluten in your system it can set you up for both water retention and getting ill. I am always washing my hands even at home before I eat or put my hands to my face to make sure I don't get CC'd. It makes a big difference.

Well its a good time to cozy up. Hope you are getting some good rest in.

I had a very pleasant Christmas with my boyfriend and an old friend.

It seems I am turning the corner with this gallbadder condition. I am still allergic to lemons! I was consuming lots to help flush out my liver... sheesh! Now without them last night I tolerated eating a bit of (skinless) chicken. Hurrah! The dandelion root and marshmallow root with either the Oregon grape root or barberry root or the nettles is still working for me....

I am also considering trying out some homeopathics: Chilidonium majus to be specific and cholestronium.

Bea

Hey Bea, I'm really glad that you're managing to get on top of the gallbladder thing. That is the condition that I find the most difficult in our recovery. Sometimes the discomfort is unbearable! I know now that generally the gallbladder/liver play up with me when I'm fighting something off. Normally I don't really get symptoms (since going gluten free) but this time WHAM, we are all down with this thing ... my poor children have had fever on and off for 5 days. If it goes on much longer I'm not sure what to do. My first line would be peppermint oil on the soles of their feet (diluted down of course!) but I really don't like doing that as it is such strong stuff and not ideal in such small children. Wonder if Spearmint will have the same fever reducing effect - do you know? Interestingly, I'm still on the herbal formula (will be until the 16th Jan) and it does really seem to be working. Sometimes I add in either dandelion or milk thistle for the liver but overall pretty good (touch wood!).

Well at the moment it is 4am here, been woken up yet again by my daughter, who is upset because I can't fit both her and her little brother in my bed (he has been up two nights in a row because he gets very bad breathing with a cough and I need to make sure i get him to the steam room in good time - i.e. the bathroom with hot steam from bath and vicks vapour rub - a classic UK thing). Have nearly finished the company accounts for my husband - what a nightmare jigsaw puzzle that was! Then we have a houseful of family on New Year's Eve. Now, if one's estranged husband should pay a surprise visit to you and your children on Christmas Eve and bring you not one but three haunches of venison because he knows you like it... how would one read that?!

YoloGx Rookie

Hi Reba, I'm pretty low carb in what I eat. Mostly meat, some fish, some eggs and vegetables... though hardly any potatoes, butternut etc. Sometimes I'll have some seeded bread, but not that often. I agree totally that the processed foods can make things worse so I do tend to steer clear. I have to say it is pretty tricky being gluten, coconut, dairy (mostly apart from some cheese), processed food, and fruit free (I sometimes have banana but my acupuncturist says I need to stay on warm foods, which fresh fruit generally isn't). I don't tolerate flax very well and the avocados we get here in sunny UK are pretty dreadful. I'm intolerant of coconut oil and a few other things. I find though that if I'm feeling puffy a meal or two worth of fasting sometimes gets things sorted. I don't really suffer luckily from low blood sugar because of the food diet I follow.

Are you sure Caroline if you might not have a low level salicylate sensitivity? It sounds to me like you might.

YoloGx Rookie

Hey Bea, I'm really glad that you're managing to get on top of the gallbladder thing. That is the condition that I find the most difficult in our recovery. Sometimes the discomfort is unbearable! I know now that generally the gallbladder/liver play up with me when I'm fighting something off. Normally I don't really get symptoms (since going gluten free) but this time WHAM, we are all down with this thing ... my poor children have had fever on and off for 5 days. If it goes on much longer I'm not sure what to do. My first line would be peppermint oil on the soles of their feet (diluted down of course!) but I really don't like doing that as it is such strong stuff and not ideal in such small children. Wonder if Spearmint will have the same fever reducing effect - do you know? Interestingly, I'm still on the herbal formula (will be until the 16th Jan) and it does really seem to be working. Sometimes I add in either dandelion or milk thistle for the liver but overall pretty good (touch wood!).

Well at the moment it is 4am here, been woken up yet again by my daughter, who is upset because I can't fit both her and her little brother in my bed (he has been up two nights in a row because he gets very bad breathing with a cough and I need to make sure i get him to the steam room in good time - i.e. the bathroom with hot steam from bath and vicks vapour rub - a classic UK thing). Have nearly finished the company accounts for my husband - what a nightmare jigsaw puzzle that was! Then we have a houseful of family on New Year's Eve. Now, if one's estranged husband should pay a surprise visit to you and your children on Christmas Eve and bring you not one but three haunches of venison because he knows you like it... how would one read that?!

I'd read your estranged partner is probably trying to get into your good graces, if not more... But then what do I know??

Most people in my experience do not think peppermint is "such strong stuff" unless they have a sensitivity to it. Hmmm...?Really do check on the salicylate thing. Maybe a homeopathic remedy for your kids might be better??! Are your kids gluten free too? If so, make sure its a gluten-free formula.

My dad did the Vicks vapor rub too. Also kept the windows open at night... Froze us half to death even in California. He was mostly of Scottish descent. We'd always get sick around Christmas which often lasted til New Years at least. I used to count on losing ten pounds over the holidays; and I was pretty thin to begin with. If only I knew what I know now back then I would not have had to experience all those years with colds and flu up the yin yang.

I'm a little less enthusiastic about the meat thing today from last night. I was pretty much fine until I went for my daily walk and ended up feeling pains in my gut I don't normally. Plus my head got feeling a bit under it. Not as bad as before--so I am definitely improving. However I am not out of the woods yet. I did not eat any meat tonight and now that I had more peeled apples and pears plus my dandelion et al tea I feel much better. I am starting to eat a bit of sprouted tofu with my veggies and rice these days just for a change from beans and the occasional fish.

Meanwhile doing the acupressure is helping both me and my good friend Graeme -- I did some acupressure on him after work and it seemed to help. He too is going through a healing crisis--also involving the hormones--for him it is testosterone. He's started taking testosterone cream but neither the pharmacist nor the doctor told him how much to use. So for now we are guessing, which is not the greatest thing to do. His left arm has been hurting terribly. It went away after the first day when he took too much of the testosterone cream (which made him feel strange in other ways--so it really was way too much)--but now it has come back again. The acupressure helped him feel less wigged out and more calm. I thought maybe it was his heart also acting up but it seems not, if the acu pressure points are correct. Very strange. He'll be writing an email to his doctor first thing in the morning. Christmas got in the way of his getting the correct information on how much testosterone to take...

Meanwhile I was reading acupressure can be great for treating colds and flu. Another avenue for exploration?? Not to speak of regulating hormonal conditions. It is definitely meanwhile helping out my liver and gall bladder... Especially the points on the feet on the top between the large toe and the next as well as half way down the to of the foot from the little toe where it hurts (assuming it does of course...). Could help you too with your edema--esp. the liver drainage spot. The kidney spot is underneath on the bottom of the foot where the large toe makes a big curve underneath... I bet there are diagrams on line. Other spots around the ankles affect the sex glands... There are drainage spots on the face on either side of the nose for nasal catarrh etc.

Hope you feel better soon, no matter what direction(s) you explore... And that you recover enough for New Years!

Bea

CR5442 Contributor

Are you sure Caroline if you might not have a low level salicylate sensitivity? It sounds to me like you might.

Hey Bea, I'm not so sure as I've been taking these herbs and I don't get a reaction from them at all.. and they are full of salicylates. I really think this bloating has been down to the change in bowel activity (going from D to solid) and also from the changing in hormone levels. I have no sinus issues, which is usually a tell tale sign according to on of our herbal tutors. I don't get the urticaria with them... only when I eat something gluten suspect or when my liver is overloaded from something. Today, after a week of being poorly I feel kind of fine. No liver pain, no itching (all my itching came in the first half of the month - aka estrogen), no nausea (touching wood here!)... Looking forward to the next monthly cycle to see if the liver pain/itching improves from this time round.

CR5442 Contributor

Just looking at the top symptoms of salicylate sensitivity from the website:

Itchy skin, hives or Rashes 8 - only in estrogen cycle

Stomach pain/upset stomach 7 No

Asthma 7 No (used to have when eating gluten)

Headaches 6 No - only when have a cold

Swelling of hands and feet 5 A little

Breathing difficulties 5 No

Bed Wetting 5 NO!!

Mouth Ulcers or raw hot red rash around mouth 5 No

Persistent cough 5 No

Frequent need to urinate/urgency to pass water 5 No (since eliminating gluten)

Wheezing 4 No

Changes in skin color/skin discoloration 4 No

Swelling of eyelids, face and lips 4 No

Fatigue 4 Well who wouldn't be with two children, a business and a university course?!

Sore, itchy, puffy or burning eyes 4 No

Watering eyes 4 No

Anaphylaxis (this is very rare, but deadly) 3 Clearly not

Sinusitis 3 Used to but has resolved

Diarrhea 2 No (since no gluten)

Nausea 2 Not really - only in estrogen cycle

Chronic sweating or no sweating 2 Not since taking the Herbals

Aching Muscles and joints 2 No

Congestion 2 No

Nasal polyps 2 No

So overall I would say no. Though the above are often signs of a sensitivity to something ingested... not just salicylates. They are allergic reactions and intolerance. Now I def. had a lot of these when I was eating gluten and coconut oil. Now they are both gone so are most of the symptoms.

YoloGx Rookie

Just looking at the top symptoms of salicylate sensitivity from the website:

Itchy skin, hives or Rashes 8 - only in estrogen cycle

Stomach pain/upset stomach 7 No

Asthma 7 No (used to have when eating gluten)

Headaches 6 No - only when have a cold

Swelling of hands and feet 5 A little

Breathing difficulties 5 No

Bed Wetting 5 NO!!

Mouth Ulcers or raw hot red rash around mouth 5 No

Persistent cough 5 No

Frequent need to urinate/urgency to pass water 5 No (since eliminating gluten)

Wheezing 4 No

Changes in skin color/skin discoloration 4 No

Swelling of eyelids, face and lips 4 No

Fatigue 4 Well who wouldn't be with two children, a business and a university course?!

Sore, itchy, puffy or burning eyes 4 No

Watering eyes 4 No

Anaphylaxis (this is very rare, but deadly) 3 Clearly not

Sinusitis 3 Used to but has resolved

Diarrhea 2 No (since no gluten)

Nausea 2 Not really - only in estrogen cycle

Chronic sweating or no sweating 2 Not since taking the Herbals

Aching Muscles and joints 2 No

Congestion 2 No

Nasal polyps 2 No

So overall I would say no. Though the above are often signs of a sensitivity to something ingested... not just salicylates. They are allergic reactions and intolerance. Now I def. had a lot of these when I was eating gluten and coconut oil. Now they are both gone so are most of the symptoms.

Hi Caroline-- I thought you might have a salicylate condition due to the things you mentioned that you were allergic to--particularly coconut, most fruit (except banana), flax, avocados plus the getting puffy from some meals and only tolerating potatoes now and then. I would look at the salicylate lists of low to medium to high sals and just see. I did not get clear symptoms until fairly recently, except for being very sensitive to aspirin and nuts. For me trouble sleeping came first. It could explain your liver problem.

YoloGx Rookie

I hope you are right and are not salicylate sensitive. However I think it may be worth checking out a bit more given your particular food sensitivities. Here's the salicylate site in case you are interested. You just might find it helpful. The forum might be a place to check out too besides the food lists...

Open Original Shared Link

The good thing with SS is that people often do get better. Curing the liver and the gut seem to be key--as well as avoiding heavy salicylates.

Bea

CR5442 Contributor

I hope you are right and are not salicylate sensitive. However I think it may be worth checking out a bit more given your particular food sensitivities. Here's the salicylate site in case you are interested. You just might find it helpful. The forum might be a place to check out too besides the food lists...

Open Original Shared Link

The good thing with SS is that people often do get better. Curing the liver and the gut seem to be key--as well as avoiding heavy salicylates.

Bea

Hey Bea, I'll take a good look at the things i'm sensitive to. You may be right, but it doesn't explain why I can tolerate the herbs so well.... Hmmm! Anyway, the good news is that Izzy seems to have turned a corner this evening (touch wood) and Hugo is now in bed hopefully to wake up later with no fever. Hugo seems to get things much worse than all of us. They are on pretty much gluten free - the occassional thing turns up when we go out that isn't, but I think my family are fairly happy to accept that I'm so much better without it, therefore it is likely that the children will be too!

We now have a houseful for New Years. What do you have planned?!

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    • Wheatwacked
      How high is too high?  I take 10,000 IU vitamin D3 every day.  My blood is stable at 80 ng/ml (200 nmol/L).  Even at 10,000 a day it took 8 years to raise it to 80.  Higher levels of 25(OH)D in blood can moderate the autoimmune attack.  Vitamin D Is Not as Toxic as Was Once Thought Lower vitamin D levels have also been associated with increased OCD symptom severity.  This is a most dangerous popular belief. As mentioned you are suffering from vitamin and mineral deficiencies.  Part of the recovery, that is never explained by doctors, is replenishing your deficits.  Celiac Disease is a disease of malabsorption.  The Western diet is a diet of deficiency.  That is why many processed foods are fortified.  Gluten free foods are exempt.   "I’ve been completely asymptomatic since diagnosis."  There are 200 symptoms that can be caused by Celiac Disease and the malabsorbtion it can cause.     • "Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). " Many are misdiagnosed as gall bladder disease.  Choline is needed to create the bile salts needed to digest fat.  90% of our population is deficient.  Eggs and beef are the best source.  The RDA (minimum daily allowance is 500 mg to 3500 mg daily.  One egg has 27% DV.  Broccoli, chopped, boiled, drained, ½ cup only has 7%.  Low choline can cause Non Alcoholic Fatty Liver Disease.   Choline and Risk of Neural Tube Defects in a Folate-fortified Population; Could we be overlooking a potential choline crisis in the United Kingdom?;   Choline was formerly called vitamin B4.  I prefer phoshphatidyl choline for supplementation as it is the form we get in food.   • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds.  Vitamin D deficiency may be linked to chronic back pain, But I took levothyroxine for slightly low FT4 levels.  I supplement Iodine by taking Liquid Iodine.  50 mcg per drop.  The RDA is 150 mcg to 1000 mcg in the US.  In Japan it is 150 mcg to 3000 mcg.  I take 600 mcg a day. Since 1970 the intake of iodine has decreased in the US by 50%.  Hypothyroidism has increased 50%.  Insufficient iodine leads to the thyroid gland working harder to produce these hormones, and if it cannot keep up, hypothyroidism can develop, according to the Mayo Clinic.   Iodine Insufficiency in America: The Neglected Pandemic.   I see improvement in muscle tone, healing, brain fog since taking the Liquid Iodine.  I could not eat enough seaweed. B1 stops the cramps in my feet B6 speeds up gastric empying and works on my freezing toes at night.  250 mg several times a day sometimes.  Also seems to be helping bowel regularity. 5 mg Lithium Orotate helped me with overthinking.   10,000 IU vitamin D to control autoimmune, mental health. 500 mg Thiamine - neurologic symptoms 500 mg Nicotinic Acid - increase capillary blood flow 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle 1000 mcg B12 - creates hemoglobin for oxygen transport 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously so it is officially labeled "Conditional Essential" as Choline used to be, but not enough when sickness increases inflammation. reduces Reactivite Oxygen Species (ROS are are free radicals.). 840 mg Phosphatidly Choline x 3 - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects (along with B6, B12, folate, Taurine. Iodine - muscle tone, testosterone, hyper and hypo thyroid, slow healing.  600 mcg of Liquid Iodine.  Sometimes twice a day, usually added to a drink.
    • Scott Adams
      I completely understand the frustration of finding reliable gluten-free ingredients—it's exhausting when trusted products disappear or companies don't respond to safety inquiries. For teff flour in bulk, check out Azure Standard or Bulk Foods; both often carry gluten-free grains in larger quantities and clearly label dedicated facilities. For soy flour, Anthony's Goods tests for gluten and offers bulk options, though always verify their current certifications. For beans, peas, and lentils, Palouse Brand is a great choice—they're GFCO-certified and transparent about their farming practices. As for lentil elbow macaroni, Explore Cuisine offers similar pastas, though cross-contact policies vary. When companies don't respond, I lean on third-party certifications (GFCO, NSF) or stick with brands like Jovial or Edward & Sons that prioritize allergen safety. It's a constant hunt, but hopefully these leads help! Have you tried local co-ops or ethnic markets for teff? Sometimes they stock bulk African or Indian brands with clear labeling.
    • Scott Adams
      Beans in desserts are a fantastic way to add moisture, structure, and protein while keeping recipes gluten-free. Black bean brownies are a classic, but other beans like adzuki and pinto can also work well—adzuki beans are naturally sweet and often used in Asian desserts, making them great for cookies or cakes. Lentils, especially red lentils, blend smoothly into batters and can replace flour in recipes like blondies or muffins. Since you’re allergic to chickpeas, you might try navy beans or cannellini beans for a milder flavor in vanilla-based desserts. For less crumbliness, blending cooked beans into a paste helps bind the dough, and adding a bit of xanthan gum (if tolerated) can improve texture. If you’re experimenting, start with recipes that replace half the flour with bean purée before going fully flourless. Have you tried using aquafaba (bean liquid) as an egg substitute? It works wonders in gluten-free baking too!
    • lmemsm
      This may make you feel better about cross-contamination: https://nationalceliac.org/celiac-disease-questions/do-i-need-new-designated-pans-plates-and-utensils/ https://theceliacscene.com/rethinking-cross-contamination-no-need-to-be-so-careful/ I use Tom's of Maine or a toothpaste that states it's gluten free.  I have allergic reactions to some toothpastes so some of the toothpastes in health food stores are usually safer for me. They're typically gluten free as well. Spices can contain cross-contamination from gluten.  There are a few lists online of spices that are safe for celiacs.  I also grow my own herbs and use them in place of store bought when I can.  I think Badia lists their spices as gluten free and Spice Lab has some gluten free too. Knitty Kitty has a great point about nutritional deficiencies and B vitamins.  I got a lot of aches and pains when I got off gluten.  I tried to replace wheat with other healthy grains like teff, buckwheat and sorghum.  Limiting one's diet too much and not getting enough vitamins, can make someone feel worse.  A lot of the gluten free foods in the stores are made with lower quality ingredients than the wheat varieties.  I try to replace all my foods with homemade options.  Then I know the quality of the ingredients and which vitamins I may be high or low in.  Probiotics or prebiotics can help with bathroom issues.  Better to get them in foods if possible and not pill form.  My doctors keep recommending magnesium too.  It's not supposed to be taken alone, but they don't seem to care about that.  It's easy for vitamin D to be low too.  That was another thing doctors told me to take.  Unfortunately, they didn't monitor it and it went too high.  Again, better from natural sources like food and sunlight.  However, supplementing can help if you're not getting enough.  Some sources say to take D with K2.  You may want to have iodine levels checked.  If you add iodine, make sure to get sufficient selenium for thyroid.  You can get iodine naturally in most seaweed.  Nori may also be one of the few non-animal sources for B12.  Brazil nuts are a good source of selenium and you only need a few a day to meet RDA.  Some brands of nuts specifically say gluten free.  Unfortunately, there are issues with Brazil nut production and they're much harder to find this year. The more you can vary your diet the better.  One study said aim for at least 30 different foods in a week.  You might want to try kiwi fruit.  There were some studies that said eating kiwi improved mood.  It also has a covering which most people don't eat, so that should protect what's inside from contamination. I've limited my diet quite a bit over the years because of migraines, so I know how uncomfortable it can be finding safe foods.  However, I'm afraid limiting diets like that may actually be causing more harm than good.  It's something I'm trying to work on.  I keep trying to expand the number of foods I eat and my recipe repertoire.  I made a list of brands of foods that I've found that are gluten free so I have a guide when I'm shopping.  
    • knitty kitty
      Hello, @Dora77, I agree with you that your doctors aren't very knowledgeable about Celiac Disease.  My doctors didn't recognize nutritional deficiencies either.  I became very deficient in vitamins before I was diagnosed, so having experienced similar, I understand what a difficult time you're having.   Poor absorption of essential nutrients is caused by the damage done to the intestines by Celiac Disease.  The gluten free diet can be low in essential nutrients, so supplementing to boost your absorption is beneficial.  New symptoms can develop or worsen as one becomes more and more deficient.   There's eight essential B vitamins that our bodies cannot make, so they must come from our food and supplements.  These eight B vitamins work together, like instruments in an orchestra.  They need to be supplemented together with essential minerals like magnesium.   Deficiencies in the B vitamins can have overlapping symptoms.  Some symptoms can be traced to specific B vitamins.  OCD can be traced to low Pyridoxine Vitamin B 6.  Yes, I had OCD and washed my hands until my skin cracked and bled.  ADHD symptoms can be traced to low Thiamine Vitamin B 1.  ADHD is something one is born with.  People who are born with ADHD have a metabolic problem with getting sufficient thiamine into their brain cells.  People who develop symptoms of ADHD later in life are more likely to be low in Thiamine.  The same symptoms appear if one is not getting sufficient thiamine from the diet.  Yes, I developed symptoms of ADHD.  These symptoms improved and disappeared after supplementing with Thiamine and the other essential nutrients. I was diagnosed with Type Two Diabetes.  99% of diabetics of both types are deficient in Thiamine because our kidneys don't re-absorb thiamine properly.  Thiamine is needed to make insulin and digestive enzymes in the pancreas.  Poor digestion (floating, undigested stools) can result with insufficient pancreatic enzymes.  The gall bladder (upper right quadrant) needs thiamine to make and release bile which also helps with digestion.  Constipation is also a symptom of Thiamine and magnesium deficiencies.  The thyroid is another organ that uses lots of Thiamine, too.  Low thyroid hormones can be due to insufficient thiamine, selenium, iron, and iodine.  Swelling of hands, face and feet are also symptoms of thiamine insufficiency.   Our bodies use thiamine to make energy so organs and tissues can function.  Thiamine cannot be stored longer than three weeks.  If our stores are not replenished every day, we can run out of Thiamine quickly.  If we do get some thiamine from our diet, symptoms can wax and wane mysteriously, because a twenty percent increase in dietary thiamine causes an eighty percent improvement in brain function and symptoms.  Thiamine interacts with all the other vitamins in some way.  Many other vitamins and their metabolic processes won't work without thiamine.  In Celiac Disease you are apt to be low in all the essential nutrients, not just thiamine, but thiamine deficiency symptoms may appear first. Talk to your dietician about eating a nutritionally dense gluten free diet.  Keep in mind that processed gluten free foods do not contain sufficient vitamins to be useful.  Processed gluten free foods are filled with saturated fats and excess fiber (that could explain your constipation).  Dairy products, milk and cheese can cause problems because Casein, the protein in dairy, causes the same autoimmune reaction that gluten does in some.  Your current restricted diet is dangerous to your health.  I followed the Autoimmune Protocol Diet (Dr. Sarah Ballantyne).  It's a Paleo diet that promotes intestinal healing.   Discuss with your doctors about correcting nutritional deficiencies as soon as possible.   Interesting reading... https://pubmed.ncbi.nlm.nih.gov/34165060/ https://pubmed.ncbi.nlm.nih.gov/21816221/#:~:text=Lipid-soluble thiamin precursors can,and attention deficit%2Fhyperactivity disorder.
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