a weird symptom...

Discuss issues related to multiple intolerances here.

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sarkin
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Post by sarkin »

Hi, cousin ;) - here's hoping your seasonal allergies are reduced after further healing! That's been a side benefit for quite a few of this. IMO that means that mast cells are in the picture, but not demanding primary focus. (And here's hoping it stays that way - for both of us.)

Good point, maybe gluten is not the culprit for your bumps. I'm a little trigger-happy with the gluten blaming. But it's deserved...
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Post by draperygoddess »

I, too, am beginning to see the gluten monster in every shadow! I think I could come up with a good case for just about everyone in my family. And my dad is diabetic, so I'm wondering if gluten could have anything to do with that. He's type II, and I've only seen reference to a connection with type I, but I wonder...I did South Beach a number of years ago, partly because I couldn't lose the weight after the last baby, and partly due to my dad's blood sugar issues, and it worked really well for me. Couldn't stay on it because it was so restrictive, just for the sake of keeping my weight in check, but gluten is a whole different story. And how many people have told me they were on a low-carb diet and actually felt sick after being on it for awhile if they ate a lot of carbs? Makes me wonder if the problem was really the carbs or the gluten...just sayin'!
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Post by Sharaine »

Yes, I have had those bumps on my head. I wondered what they were and where they came from. At first I was afraid I'd caught a bug (literally) during my travels, but that quickly became not the case.

Interestingly, I have a red bump on the inside of my knee and no idea why. Plus, my skin has been more itchy than normal of late. I need to look at my lotion and hair products ingredients. I'm going to be really sad if Nioxin has gluten in it.

Sharaine
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Multiple intolerances

Post by Jeanie »

I have been searching for answers, but am stumped. Besides my MC, I also have Folliculoptropic Mycosis Fungoides. I have figured out by looking it up that the occurrence is one out of 7 Million people that have it, so I don't have much hope of finding a lot of help.

I have developed an itchy scalp that seemed to start when I used some serum that came along with my L'oreal preference hair color. As soon as it was on my scalp I had a terrible burning. Since then I've had a problem with itching. In addition to that, my eyes have been terribly itchy and I nearly rubbed them to oblivion. I believe that is a separate problem. I have had allergies pretty much all of my life. I take Cetirizine daily and in addition have been using ChlorTrimeton which helps greatly with the histamine problem. (Thanks Tex). That got worse when I ate a banana (it was a bit overripe.). Big mistake.

Last Wednesday, I saw my Dermatologist for my FMF and he prescribed Clobetasol Propionate Shampoo for my itchy scalp. After I got home and read the ingredients, I discovered it contains SLS. Not too long ago I had discovered that nearly all shampoos contain SLS and I have gone to great lengths to find shampoo that does NOT contain SLS! I have read that it's widely used because it foams up and is CHEAP. Then I discovered this prescription for one month retails for $415.00. And he wants me to wash my hair with it every other day for the rest of my life! I have not opened the container and I'm quite sure I don't want to ever use it. I do feel for him because he is trying to treat me for a disease that he has only barely heard of and has no other experience with. I went on Facebook to a group there of people that have MF (it is non Hodgkin's lymphoma)
And inquired if anyone else had FMF and so far no response which is what I expected.

It's hard to know what to do anymore but I really would like to avoid any more drugs. I am getting more disenchanted with them all the time and I know a lot of doctors depend on them. As to the shampoo,I would rather scratch my scalp than use SLS. Oh yes, in addition, I use UVB light box twice weekly for the MF and not sure if I should cover my scalp or have it exposed.
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Post by Gabes-Apg »

Hi Jeanie

a few here have 'mast cell/histamine' reactions to hair colouring.

One solution for the itchy scalp - Zinc using a liquid zinc mixed with some water, rinsing the scalp 2 times a day
maybe used distilled water
Coconut oil will also help relieve itching and help the scalp heal

how are your Vit D levels?? I would ensure that you are getting enough Vit D3 and magnesium, as this will help the body with the inflammation reaction and help with the skin issues... In this post is some information about conditions linked to magnesium deficiency http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20099

if you are deficient in key nutrients, then your body will struggle to convert the UV into useable Vit D3.

Hope this helps
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Post by tex »

Hi Jeanie,

I'm sorry that you're having to deal with such a persistent and aggravating condition. Since non-Hodgkin's lymphoma is associated with untreated gluten sensitivity, I assume that you are being very careful to avoid all traces of gluten in your diet. In addition to the UVB treatment, be sure to have your vitamin D level tested. To add to what Gabes posted, if I were in that situation, I would also take oral vitamin D in order to try to keep my vitamin D level up around 100 ng/dL or better, if possible.

Your symptoms suggest that you may have systemic mastocytosis. The most experienced and qualified doctors for diagnosis and treatment of mastocytosis are located at Brigham and Women's Hospital, in Boston, trained under the direction of Dr. Maria Castells:

http://physiciandirectory.brighamandwom ... e=castells

Dr. Castells or one of her associates would be your best bet for properly treating your condition.

If you cannot justify getting an appointment there, the most likely treatment that they would prescribe would be up to 4 times the labeled dose of an antihistamine that seems to be effective for you, plus avoiding the foods that contain the highest amounts of histamine, or foods that cause the release of histamines.

I took an antihistamine about an hour ago, because I ate a banana about mid-morning that apparently was a little riper than I thought, and my skin was beginning to itch in various places. In addition, mold levels are high here these days because of all the heavy rains over the past few weeks. Histamine is definitely a serious problem for many of us.

Regarding scalp exposure to UVB: I really don't know much about this, but it appears that quite a few people use a similar treatment for psoriasis:

https://www.psoriasis-association.org.u ... -treatment

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Weird symptoms

Post by Jeanie »

Tex and Gabes, thank you so much for your quick replies! It was here that I first heard about histamine foods and mast cells. I would sometimes be affected by bananas and watermelon (for many years) but I didn't know why. Now I found out that bananas were ok if they weren't very ripe but you know how long that situation lasts 😏

Gabes, thanks for the suggestion for hair washing. I use coconut oil a lot for cooking so I shall try that. Did you both agree with me about not using that ridiculously expensive shampoo? (even if it was cheap, I wouldn't). I haven't found out yet about liquid zinc. I have an aloe plant, would that help?

I have been taking 7800IU of Vit D3 for a long time. Guess I need more? Also 925mg of Magnesium. Plus. a lot of other vitamins. Not to mention my ten prescription drugs.

Another problem - I have been cleaning in my garage. Sweeping dirt, leaves,etc and going through old papers. That usually kicks in my allergies. My eyes are so much better today but for awhile I thought I might be rubbing them right out of my head.

I had some surgery on a toe this summer and they sent me home with some pain pills. I found out later that they were opioids. I only took them for 1 1/2 days, but got horribly constipated. (Which my system doesn't know how to handle.). Never again! However, the D is mostly gone but I'm still having problems with C.

I don't think I'll be going to Boston. I am so thankful for this forum! As to the FMF, I feel pretty alone on that.
When my Dermatologist told me to wash my hair every other day I said that was too much so he said "Why?" I read a lot on the Internet and several hair people said that with dry and/or curly hair, once a week would be better. And I understand that SLS strips the hair. (But you see, he really doesn't know)

So, I can increase the ChlorTrimeton, try the coconut oil or perhaps zinc and should I still increase the D3 ? I wanted my regular doctor to test it but she declined. She IS holistic but I do not believe that she understands the M.C. She has an article on the web that says, "maybe it isn't the gluten." I'm not too happy about that.

Thanks again.
Love,
Jean
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Gabes-Apg
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Post by Gabes-Apg »

Jean
based on your reply it would be good to know what your Vit D3 level is, with the various forms of inflammation you might be using all that you are taking,
you can do a vit D3 test via the Vit D council you dont need your doctor. It costs about ??$65 from memory

is that 7800iu of D3 daily?
also with the magnesium is that 925mg of elemental magnesium daily? Check the small print on the back of the bottle
and are you doing it all via oral delivery

Oral delivery of high doses of magnesium can cause Diarrhea - even me with C dominate MC issues can not take that much orally without causing D
then again if you are C dominate keep taking high doses orally...

not having tried that type of shampoo I cant definitely say skip it. in saying that, what i have learnt from my 6 years on this forum, and the various health issues that others and myself have had, things like that are bandaids, they may reduce the symptoms but they are not treating the root cause...

fixing nutritional deficiencies/imbalances is worth the time and patience for long term wellness..

If it was me,
- Yes try the aloe plant, - quite a few articles on the net mentioning its benefits. and if you can do the coconut oil and the zinc. all of them will help relieve the symptoms AND help the scalp to heal.
- get onto the bland, low inflammation, low histamine eating plan and reduce the inflammation in your gut (avoid fibre as this bulks up the stool and can make the C worse) Increase water intake, increase fat intake (either via animal fats etc)
- start taking some anti-histamines and avoid activities/locations that cause allergic reactions for now until you get things way more settled (i know you can't avoid everything, but minimise it as much as possible for a few weeks )

most of all, be aware that it will take a few weeks for things to improve, be patient.
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Post by HappyBird »

My head itches from my psoriasis and if I eat something that doesn't agree I itch all over and much worse on my scalp.
Psoriatic Arthritis
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Post by tex »

Jean,

If you have been taking that much vitamin D for a long time, then you probably don't need to increase your dose, especially since the UVB treatment is surely causing your skin to produce additional vitamin D. It's best to not allow your vitamin D level to rise above about 150 ng/mL. If you want to order a test yourself, here is a link to the lab that many of us here use for testing our vitamin D level.

https://vitamindcouncil.zrtlab.com/

The test involves collecting a few drops of blood on a special card, letting it dry, and then sending it to the lab in a prepaid envelope. The kit even includes a small tool that will automatically prick the side of your fingertip in order to draw a few drops of blood, plus instructions and everything else needed to do it yourself. I have checked their results against the lab my doctor uses, and their results were identical. Results are posted on their website after a few days, and you can log in to read them, print them, or download them for filing on your computer.

Old newspapers and leaves tend to draw moisture, so they are prone to mold and mildew, and they always cause me to react when I am around them. Getting rid of them is a job I always hate.

That's some mighty expensive shampoo. It must have some gold dust in it. :lol: I don't know much about shampoos, but I find that if I don't wash my hair at least every other day, I get itchy/burning/aggravating bumps, especially at the back of my head. Of course, it's actually washing the scalp that helps to control/prevent those bumps, but it's impossible to wash the scalp without washing the hair. Since I usually shower every day, I usually just wash my hair every day, while I'm at it.

Some of those prescription drugs could be causing C, also, but it's difficult to say which one or ones.

Love,
Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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a weird symptom

Post by Jeanie »

Gabes and Tex,

Thank you so much for responding again and I'm so sorry I didn't get back sooner. Too much going on I guess.

Last Tuesday I had an appointment at the University of Minnesota with my Dermatology specialist. I showed her the Shampoo I am supposed to use. She thought that I should use it, but just twice a week. I noticed it said on the package that I should not use it for more than four weeks. My local doctor said to use it the rest of my life. The U doctor said to just use the one bottle and I really don't want to do even that. So I did use it a couple times so far. My scalp felt a bit irritated and I still have some itching. I HATE the SLS. I had to leave it on for 15 minutes and then I rinsed it in the sink and after I finished my shower, I saw that the sink was still completely full of suds! I may try to contact that company and ask why the SLS is necessary. Anyway, I think I'll end up trying some of those other things mentioned.

Tex, I did have to laugh about your explanation of the kit and the use of the lancet. I also have Diabetes and I know all about finger pricking!! Oh boy, do I know! I should try to get that Vit D check. Gabes, that IS 7800iu daily. I surely do know about doctors and their "bandaids". They seem to prefer doctoring symptoms rather than addressing the problem. But in the case of the FMF of course, who really does know?

I am actually suffering with a worse problem ever since I took the opiods. Only 1 1/2 days, but I am now stuck with the problem of the C. I thought the D was bad but at this point I would prefer it. Yes, I have had accidents and problems with the D, but I am far more miserable now. I just don't know what to do about it. I would hate to have to go to a doctor with it. I read somewhere that it wasn't so good to take Psyllium but it seems that should help a bit. I just don't want to make things worse. (As of I could!)

Tex, you mentioned earlier about the mast cells. So perhaps that's the problem and not the FMF. Of course, follicular does mean the hair follicles are involved. I'm sure I stirred up a lot by cleaning the garage, but when you live in Minnesota and it's November there isn't much mild weather left. So I just had to bite the bullet and do it.

Thanks so much for your advice and your concern.

Love,
Jean
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A weird symptom

Post by Jeanie »

Tex, I just had an epiphany. A short time ago I had some sneezing due to an allergy attack. I have had allergies my whole life. Right after that I started scratching my head. I realized that it hadn't been bothering me all day. I am now thinking that my itchy scalp may be due to my allergies rather than my lymphoma. In that case, it might not make sense to use the $400 shampoo. It could possibly do more harm than good. I have been careful about not using gluten. A while back I was told by my hairdresser to use a humectress after washing my hair. I later discovered it has gluten in it, so I quit using it. Any thoughts?

Love,
Jean
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Post by tex »

Jean

I have also had allergies virtually all of my life, except that my pollen allergies temporarily disappeared for a few years when my MC was active. When I was a kid, I had major asthma problems, but that faded away when I was in my 20s.

For decades, my reaction to pollen allergies was classic sneezing, runny nose, and watery eyes. These days, if I have any of those symptoms they tend to be very minor. Instead, I tend to have minor to occasionally moderate throat congestion. My response to histamine issues (triggered by too much histamine in my food), is itchy skin (usually areas on my forearms or my lower legs, occasionally my scalp). The point is, our allergic responses can change over the years.

If that shampoo makes your symptoms worse, it certainly wouldn't be the first one to do so. Pharmaceutical manufacturers are notorious for formulating products that contain ingredients that trigger allergic or intolerance reactions. Apparently they hire sadists rather than chemists to formulate most of their products. Diarrhea typically causes temporary lactose intolerance (if it involves inflammation, it always causes lactose intolerance). So why do so many products designed to treat diarrhea (such as loperamide and asacol, for example) contain lactose?

The itchy eyes you mentioned in an earlier post in this thread were certainly associated with an allergic response to something.

Love,
Tex
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Post by Gabes-Apg »

Jean
going back to bland basics, inside and out will help...

try to avoid the external triggers as much as you can so the body can calm down a bit...
your body has reached its 'maximum' trigger level...

7-8000 iu per day of Vit D3 is a good start until you get your results...

Psyllium powder may well help.... but use really small amounts at a time. Things like that are very individual... what works great for one, can cause huge chaos for another.
the only way to know is trial and error....
Gabes Ryan

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A weird symptom

Post by Jeanie »

Thanks Tex and Gabes for your responses. I am so thankful that I am not worse off than I am. Between the MC and the FMF, it sometimes keeps me hopping. I see my dermatologists (2 of them) and take my treatments for the FMF, but this forum is my source of help for the MC! Since the gastroenterologist couldn't see fit to actually tell my about the collagen deposits and then his associate told me that it didn't matter what I ate, (I know that you know all about that!) there's no point to see them. I also spoke to my holistic doctor about it and I know that she doesn't understand it. I'm still chuckling a bit about her telling me to take psyllium tablets and then I should have one normal BM daily! Huh??? I hadn't taken the psyllium for years but now I had to try because mine turned into C and that has been worse. It really has helped that so now I am doing better. I still can't figure out how 1 1/2 days of taking an opiod could mess me up that bad. I haven't seen the holistic doctor lately as I don't believe that she can help me. So again I am very thankful for this Forum!!!

Tex, I have one more question. A bit earlier you suggested I take up to 4 times the normal dose. The box says to take one every 4 to 6 hours with a 6 pill maximum per day. If you meant 24 pills per day, that would wipe out a box daily. Not sure if you meant that much.

Love,
Jean
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