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I haven't posted in a while, but I am compelled to respond to this one. I, for one, suffer horribly when I use any hair product with gluten in it. I itch for days on my scalp, face and hands. My major symptom is hair loss, whether I eat gluten (or casein, soy or yeast) or get it on my scalp. It's a different mechanism, but results in the same symptoms...
I am now trying Loreal Color Vive (red bottle for dry hair) and I'm not sure yet... there is soy in it and I might be having a slight contact reaction to that. Otherwise, they state it is gluten free.
One of my many signs of a problem with my gut was when I couldn't tolerate the glasses of wine I would have on a Friday night out with the girls... All of a sudden I would get deathly ill and need 2 days to really recover. I've been gluten free for 5 mos, casein and soy free for 1 month and still am very sensitive to alcohol. More than one glass of wine and I have trembles, headache and fatigue the next day.
After a few more days of posting the question about die-off effect I woke up refreshed and ready to go... what a difference. I did find much anecdotal confirmation of the withdrawal and some objective reports of the opiate release that occurs with casein and the withdrawal that happens when it is removed from the diet.
I am reacting now to even small amounts of caffeine (yes, coffee is still on my menu), so here comes the next intolerance.
I experienced this exact thing, hence the self-medication. All of my issues started with RAI and so I KNEW everything had to be related to thyroid. I was blind but now I see! I think I'll cut back more on the Armour with my next labs. I've been pushing not to lower it too much, but it may relieve my system. My free T3/T4 ranges are at the high end of normal, but my TSH is 0. I want to move on that very slowly b/c I feel terrible (even more so) when I am hypothyroid.
And lastly, I was either glutened, caseined, or soyed on Friday night as I spent the day yesterday with extreme fatigue, scalp itching and hand tremors. That is the first time that I've had symptoms after going gluten-free,cf,sf. Now I know what happens and I see the neuro outcome.
Rachel, once again thank you for all of your information. I wanted to mention that I have more than hair loss as a symptom, it just happens to be the most persistent and distressing symptom (sadly) I've had throughout, as it has contributed to the general feeling that I have lost my youth to this mysterious group of illnesses.
My struggles began in 2002 with the onset of Grave's Dz and, as you probably know, there were many months where I thought i wouldn't live through it based on how I felt. It took 6 months for the Drs to figure out what was wrong with me... all the while, I was nursing thyroid hormones into my infant son who spent 6 mos screaming his head off, but that's another story. I spent years trying to regulate my hormone levels after having RAI, but it turned out I also had Hashimoto's antibodies. That, coupled with the Grave's antibodies, wreaked havoc on my system, even though I no longer had a thyroid.
My daughter was dx'd with Lyme Dz in 2004 and I wonder if I may carry it, too, as we lived in a very populated "deer tick" zone. And I had mercury amalgams removed unsafely to boot. My dad has MS (and is a dentist and obviously is DQ1). Soo lots of history behind all of this
My symptoms over the years have been neurologically based, but I thought all were attributed to thyroid: tingling hands and feet, months of extreme fatigue on and off, unreplenishing sleep, heart palps, hot flashes, mild dizzy spells. Right now, I feel pretty darn great compared to all the years of that. Again, I thought I was resolving issues with my thyroid all along when the gluten thing "hit" and now soy and casein. As you describe, more things keep developing as I resolve others. When will it end?
I just had some concern that I wouldn't be taken seriously on this board, or others if it seems my only concern is hair loss. I should be ashamed to admit that it is the one thing that pushed me to the research mode, but now that I have so much info on the amount of damage my system is carrying, I am even more worried about my health that it may seem, and am very serious about getting better.
My plan is to investigate Lyme and Mercury Toxicity as the primary sources of immune attack. As I am double DQ1, I am very fearful of developing MS like my father, especially if I also have mercury in my system as he surely does.
Hi Linda. Thank you for your message. I am very sorry about your sister. My father has been suffering with MS for 20 yrs. I have no answers, for sure. I do know that if you are sensitive to gluten and soy, you are probably sensitive to casein, too. I believe as Rachel says, that we will keep developing sensitivities until the underlying issue is resolved and the gut it healed. I actually hope mine is mercury so that I can address it. I don't know what else it can be. I have minimal neuro symptoms: occasional tingle in hands and feet.
I emailed Dr. Hadjivassilion and his response was:
Thank you for the e-mail. I am not an expert on HLA as such but what I do know from our studies is that those meurology patients with gluten sensitivity that do not have the HLA DQ2 or DQ8 have the DQ1.
Hope this is of some help
meurology = neurology??? But it was nice to get a response from him re: double DQ1.
Thank you for the links. I will check them out. Let's stay in touch. PM me if you want. From where are you?
I can honestly say I am pretty darn afraid of: " most of us will die of something else before we get that far, & if we do get flattened villi it is usually too late for us to recover & we are the ones that do not heal & ultimately die, & sometimes that does not take too long. "
Who is the doctor with the long H name that I should contact? I will, definitely. Thanks for your opinion. I am off gluten, casein, and soy. I am through the withdrawal i was feeling, too. That was yucky. Now what? Check for mercury toxicity? Lyme Dz?(my daughter had, by the way), parasites? Where do i start?
I am drinking Pacific Low Fat Rice Milk and Low Fat Vanilla Rice Milk. Their website states they are gluten free. Does anyone know otherwise? I do feel like I'm being glutened (heavy head and arms in morning, extreme fatigue, sinus pressure, but my classic gluten symptom is severe itching of scalp, face and arms and that's not happening now).
I'm going to chalk it up to withdrawal and check very carefully for possible gluten sources with new foods I have purchased for GFCFSF recipes. I tried searching this topic on the board, but didn't have much luck. If anyone else had withdrawal from casein and soy, would you share?
Interesting, Rachel, as Sorghum was definitely not something I tolerated well when I went gluten free. I had worse GI symptoms with that as compared to anything else. I am substituting Rice milk for creamer and cereal milk...so that is new. Wonder if rice is an issue for me. I'll try Hemp tomorrow and see if I feel the same...
Withdrawal is a good description. I am wiped out and really feel terrible. I wasn't expecting that so I had been wondering if I got glutened. Also, was wondering if eliminating casein and soy but leaving yeast (level was 10 with normal being <10) to hang out there in my system might magnify it's effects??
Is there a sort of "die-off" when one goes casein and soy free, as happens with candida when one goes yeast free? I'm 5 days off casein and soy and feel terrible. I have headaches and extreme fatigue. I've been gluten-free for 4 months.