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DH Photo Bank
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I am dx'd since October 2012 with DH via skin biopsy, and gluten free since mid-October {don't even ask about Sandy's impact on my crazy life} .... {we lost our home}

I am uncertain if I can post any photos, since I'm new to this forum.

I was initially treated in September with prednisone for 3 weeks, which mostly cleared the rash; it quickly rebounded, though, when the prednisone was stopped. I have a very painful, sometimes itchy, mostly very painful rash on both elbows, both hips, upper thighs [front and rear], and buttocks, plus some minor spots along my arms and my hairline. The rash is always symmetrical and, like I stated, very painful. I believe the underlying antibodies attack nerve cells, thus the pain, and for others the severe itch.

I am finally in good hands, medically speaking, at a university clinic where the latest cutting edge science is being studied; I am actually a part of the study there, as the MDs don't see too many cases of DH.

Dapsone may be in my near future if the rash persists.

Edited by moneek
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Welcome to the board moneek! And to the club none of us ever wanted to be members of. :o Tealiemonster is new here too. If you read the threads she has posted on then it will help you to learn.

I am so sorry to hear you lost your home to Sandy. I come from hurricane territory myself having lived most of my life in southeastern coastal Fl. so i know full well what you are going through. It's rougher than rough. :unsure:

Keep us posted on the research please. I believe you are right on the underlying antibodies attacking nerve cells. My hubs & I have discussed this often.

You are allowed to post photos. If you can figure out how to! :lol: :lol: :lol:

The best thing any newbie can do here is to read as much as you can of the forums & threads --- not just this dh forum --- you will learn fast that way.

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I was able to post my photos to photobucket .... unfortunately, they are in reverse order, the first ones, the majority of the pix, are from December 2012; the last ones are of the initial manifestation of the rash back in July 2012, plus a few in between from November, when I actually thought I was getting a bit better. take a look:

http://s1272.beta.ph...lamb/library/DH

My case is complicated by a Dx of Hashimotos during the same time period (August 2012), so I have this conflict regarding Iodine - it appears dietary Iodine can aggrevate the DH rash, but Iodine is needed for healthy thyroid function. So, I am trying to balance all of this and learning more every day.

I use no cosmetics at all, with the exception of gluten-free lipstick (Gabriel's), I lubricate the rash with a combination of pure coconut oil and borage oil lotion (shikai children's lotion, gluten-free, per the manufacturer: http://pics1.ds-static.com/prodimg/75483/300.jpg )

I'm also avoiding the majority of gluten-free food products out there - they are loaded with corn and tapioca and lots of ingredients that I have never heard of. I am eating mostly whole foods, fruits, veggies, meats, chicken, etc.

Best of luck to everyone.

M

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I only eat at home as well after getting cross-contaminated twice (I think so, anyway); it's difficult socially as most folks just don't really understand. They think, just a little bread, just one cookie, or whatever. I find it's easier to just be a bit isolated at the moment until I feel stronger.

.... m

When we go out to have dinner, I ask for their allergy menu. Red Lobster cleaned a grill for me, wore gloves and prepared salmon along with a salad. I had to wait a little longer than usual but it was worth it to know I wouldn't be cc'd. I don't even try to eat at the fast food place anymore. :rolleyes:

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can you please clarify?

we posted photos and are comparing notes; why is there an issue with that?

Yes, moneek. The dh photo bank is pretty much so that people coming on the site can go directly to it to see photos of dh in it's many, & varied presentations. It was not intended for a discussion thread other than a short comment here or there. New people wanting to look at or compare photos would have to wade through a whole bunch of discussion in order to get to the next photos posted. Also, discussions such as iodine or thyroid meds affecting dh or anything else would be well served in threads with the subject in the subject line to make them easier for people to access when they are wanting to know about that aspect. Also then, it makes things easier to search. If one put iodine or thyroid meds into the search function it would not come up with the dh photo bank as a major hit.

Hey, I'm not trying to be a downer here. I just am trying to keep people from getting discouraged when they are looking for photos or info. on iodine or on thyroid meds or this or that. I remember all too well when I was a newbie & had gluten brain fog ---- I wanted --- NO , I NEEDED the quickest way possible to access the info. I was looking for & wading through a long discussion to get to another batch of photos would throw me off. I think we all want to help as many people as possible to not suffer with this insane itch & that is what I'm aiming at with this point.

Bottom line ---- it doesn't matter what I say. Sooner or later one of the moderators is going to come along & see all the discussion on this thread, split the discussion part out, re-title it appropriately like "managing dh & thyroid meds; a balancing act" & move the discussion part with the new title.

Example: Darkfire Ann posted photos on here when she first come on & then discussion ensued. One of the moderators came along & saw it & split it out & moved it. Too bad the photos got moved with it. I will ask Darkfire Ann to repost her photos to this thread so that ppl looking for photos can find them. See:

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Yes, moneek. The dh photo bank is pretty much so that people coming on the site can go directly to it to see photos of dh in it's many, & varied presentations. It was not intended for a discussion thread other than a short comment here or there. New people wanting to look at or compare photos would have to wade through a whole bunch of discussion in order to get to the next photos posted. Also, discussions such as iodine or thyroid meds affecting dh or anything else would be well served in threads with the subject in the subject line to make them easier for people to access when they are wanting to know about that aspect. Also then, it makes things easier to search. If one put iodine or thyroid meds into the search function it would not come up with the dh photo bank as a major hit.

Hey, I'm not trying to be a downer here. I just am trying to keep people from getting discouraged when they are looking for photos or info. on iodine or on thyroid meds or this or that. I remember all too well when I was a newbie & had gluten brain fog ---- I wanted --- NO , I NEEDED the quickest way possible to access the info. I was looking for & wading through a long discussion to get to another batch of photos would throw me off. I think we all want to help as many people as possible to not suffer with this insane itch & that is what I'm aiming at with this point.

Bottom line ---- it doesn't matter what I say. Sooner or later one of the moderators is going to come along & see all the discussion on this thread, split the discussion part out, re-title it appropriately like "managing dh & thyroid meds; a balancing act" & move the discussion part with the new title.

Example: Darkfire Ann posted photos on here when she first come on & then discussion ensued. One of the moderators came along & saw it & split it out & moved it. Too bad the photos got moved with it. I will ask Darkfire Ann to repost her photos to this thread so that ppl looking for photos can find them. See:

http://www.celiac.co...-skin-shedding/

thanks for squashing the conversation and alienating other memebers. (not)

I am leaving this forum, for just this reason.

I have ideas to contribute, things to discuss, photos to share, but with the obnoxious attitude that prevails here, I am not able to bear more stress.

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I'm really sorry you feel that way. The conversation didn't get squashed; it got moved ---- to here:

and it takes a moderator to move it. I am not a moderator.

You DO have ideas to contribute, things to discuss, photos to share & I hope you will reconsider your decision. No one said you could not do all those things. They just need to have some kind of order & not be willy nilly or no one will ever benefit from your ideas, discussions & photos.

I KNOW you are under a lot of stress; not only from dh & celiac but also from losing your home to Sandy. I REALLY DO KNOW THAT KIND OF STRESS --- been there, done that. I also suspect you are going through gluten withdrawals which can make us further stressed, angry, disoriented, confused & tend to take things personally & become irrational. Again, been there, done that. I feel so much for you hon. Honestly & from the bottom of my heart I mean that. ALL that you have been through has given you major overload.

I hope you will re-consider & stay with us. As I said before; I was enjoying the discussion & I meant that.

At any rate I send you monster hugs ((((Moneek)))) & though you may not believe it those hugs are sincere. I think you need some hugs & maybe a shoulder to cry on. We are here for you whenever.

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My son is not "officially" diagnosed, as we've decided to hold off on testing until he's older. My son had silent reflux and cried constantly (and I would bet part of that was itching and not being able to scratch). He had weight loss/failure to gain issues for months. He finally made it back onto the chart at 9 months and stayed in the 3rd percentile until 15 months, where he made it all the way to the 7th percentile. He's still smallish, but he's growing consistently finally.

He had a rash almost from birth. Steroid cream made it go away, but it would come back worse. We figured out very early on (2 weeks) that he had problems with dairy...couldn't even do hypo-allergenic formula (Nutramigen, which is still milk based, though very broken down). The rash got a bit better when we switched to Neocate (dairy free) and then he started getting oatmeal and it was worse again. Once we made him 100% dairy and gluten free, the rash went away. The only time it comes back now is if he gets glutened or "dairied". Even then, it hasn't been nearly as bad as it was for months. It still itches him really bad though and he digs at it constantly (it's the worst on his legs). He does gets some random spots here and there, which I believe is because we've brought small amounts of gluten into the house again lately (bread, for brothers' sandwiches, and crackers for their snacks). So the house is going gluten free again and if that doesn't do the trick, we're going to change salt and try to start limiting iodine. Anyway, if you made it through all that (I suck at narrowing things down and wanted to make sure I gave all the necessary info), here are some pictures from when he was almost 5 months old and it was pretty much at it's worst...

Embry136-1.jpg

EmbryRash003.jpg

EmbryRash004.jpg

EmbryRash012.jpg

Getting Better (fading)

EmbryRash016.jpg

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holy crap.....i have a rash on the inner part of my arm by my elbow that are small red dots that just appeared a couple days ago and got a little worse today. i have not been diagnosed with celiacs or been tested yet, but b/c of bloating and hive breakouts, I decided to go on a soup/salad diet, which contains salt (Iodide). My bloating went away. I've been doing the soup/salad thing and eating organic blue corn chips and salted rice cakes and fruits for about a week and a half. could this be the cause of my rash??!!

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Deleted pictures and my response per the request of SPJ&E

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The tough part is finding a doctor anywhere near our area. We live in a small town and it's not easy. We drive 1.5 hrs. (1 way) to see a good pediatrician and the specialists are a good bit further (one is a 3 hr. drive one way). We would be more than willing to put him on gluten for a time, in order to do a biopsy if we could actually find a doctor within a reasonable distance that is worth anything. We took him to his ped numerous times for this rash...she was stumped. She referred him to a local dermatologist, who basically said he had no idea...to try this steroid cream on it (that his office didn't even call in like they were supposed to). He was just...dumb, to put it nicely and it was a total waste of time (and that wasn't the only issue we had with that office).

So yes, we would love to have an official diagnosis, but that's easier said than done. Our older son's GI recommended bloodwork, but I know how unreliable the bloodwork is, especially for young kids. We are not willing to put him through blood testing at this point when keeping him gluten and dairy free keeps the rash away. A biopsy we would be totally fine with. I think the derm we seen just turned us off of trying to find another, so we have kept him gluten free and he's been fine. He started gaining weight finally and we just left it alone...stuck with it and haven't worried about getting anything "official".

If you don't mind, would you please remove my pictures from what you quoted? Please know that I don't request that to be "snarky" or "rude" in any way. I just may want to remove them from online at some point and won't be able to take them out of someone else's post. Thanks!

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These first 4 are from Sept. 2011 when I was on the verge of discovering this was dh.

http://rainytown.se/...si/DSC00864.JPG

http://rainytown.se/...si/DSC00866.JPG

http://rainytown.se/...si/DSC00868.JPG

http://rainytown.se/...si/DSC00867.JPG This 1 shows the clear amber fluid. The blisters were coming up so fast & bursting all by themselves.

The following ones are after 6 months gluten free & several months low salicylate & not a lot of iodine but I had been doing so well that I couldn't resist eating 4 tsp. of strawberry banana yogurt & during the night I woke itchin like mad & my neck all broken out in dh. Then other places began to break out again.

http://rainytown.se/...si/DSC02919.JPG

http://rainytown.se/...si/DSC02922.JPG

http://rainytown.se/...si/DSC02923.JPG

http://rainytown.se/...si/DSC02926.JPG

http://rainytown.se/...si/DSC02927.JPG

http://rainytown.se/...si/DSC02929.JPG Shows the scars on the back of my leg from earlier.

http://rainytown.se/...si/DSC02930.JPG Other leg. Scars will fade away after about 5 months.

http://rainytown.se/...si/DSC02938.JPG

http://rainytown.se/...si/DSC02940.JPG Blister on lower abdomen - just formed.

http://rainytown.se/...si/DSC02945.JPG Brand new blister in crook of arm.

http://rainytown.se/...si/DSC02967.JPG

http://rainytown.se/...si/DSC02969.JPG

http://rainytown.se/...si/DSC02980.JPG

http://rainytown.se/...si/DSC02981.JPG

I have been adamant NOT to scratch! None of the lesions or scars are the result of scratching them. It's bad enough w/o making bad scars from scratching them. I will scratch around them but never on them. I will rub on them and press on them.

The only place I have not had them yet was on the soles of my feet. I get them horribly in my scalp & they tend to be very large there --- the size of a quarter. They look different than these photos but there is no way to seperate the hair well enough to get a good clear photo. In the scalp they generally take 6 weeks to heal. All others run a course of 2 to 4/5 weeks depending on if I was gluten free or got cc'd (only once) & if I got too much iodine or salicylates.

Oh my goodnees, I am so thankful you posted this. That is exactly how mine looked before I went gluten-free. I struggled with DH for so long before I finally went gluten-free and saw results. I was misdiagnosed several times by multiple doctors and I wish I would have seen this forum months ago! Do you notice any flare ups from Chlorine or Tylenol? I got in a chlorine pool this summer and had a terrible flare up. I even had to get a chlorine filter on my shower head. Lately, I have been taking Tylenol PM and am experiencing a flare up. That's the only thing I can really think of that would cause a flare up. Have you experienced exacerbations from Tylenol?

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This is a more recent picture of how the rash developed since the previous pictures. I now get reddish patches with dry flaky skin that appear before, with, and after the blisters. They don't show very well in the pic however due to being lubricated:

http://rainytown.se/...0622_135205.jpg

Dani! This is exactly how my fingers looked!!! I dont get it anywhere else on my body but I do get eczema on the back of my neck (who knows, it could be DH), but I get those itchy, red bumps on my fingers, but they dont really look like they are filled with anything. They're definitely raised, but I dont see any puss or fluid in them. It hurts when I wash dishes (my mom thinks I'm just trying to get out of it lol) Could it be DH?

Since I'm a nursing student and need to work with people in the hospital, I went to the doctor because I didnt want the patients to see my hands and get all freaked out - plus, I didnt want any of their germs getting into open cracks in my skin!! He didnt even know what DH was - looked up some pics on google and said it was eczema on my fingers, gave me some cream, and sent me on my way. The cream mildly helped but it came back so I just gave it to someone who actually had eczema.

I havent had any gluten accidents in a while, and the bumps went away. After seeing your pic I think I may have DH, but dont want to jump to conclusions because its nowhere else on my body...your thoughts?? :)

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Hi all,

I'm adding more pictures now that my rash has developed some consistency. I get it on my upper back/shoulders, buttocks (not amused :ph34r: ), stomach, jaw line and hairline. Some more recent-ish photos - the rash hasn't changed much - varies in severity (these pics are medium severity). Still not dx'd but Celiac is suspected (I think?).

http://cl.ly/image/190q3e3m1A09

http://cl.ly/image/2j1M2s2E2l2b

http://cl.ly/image/2y2A0N160h29

http://cl.ly/image/1i1o1B2D1J0H

http://cl.ly/image/3j1K3i2C412g - I always always always get this "lesion" in the same spot every time I get glutened or iodined - so strange.

Still obscenely itchy, stings, doesn't like hot weather or water, etc.

Hope this helps someone! :-)

Laura

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does dh itch? i have a rash on the inner part of my arm by elbow but it doesn't itch. i put eucerin healing ointment on it and it seems to lighten it up a bit, but does not go away. will be seeing derm in a couple weeks.

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DH is called "the suicidal itch" & that's for a reason. It itches insanely, burns, stings, & the lesions can be painful & sore.

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DH is called "the suicidal itch" & that's for a reason. It itches insanely, burns, stings, & the lesions can be painful & sore.

ok great. thanks for the info. maybe it's just dry skin. it doesn't itch at all, but it is there. it is like little red dots.

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Since dh can flare at any time until all the antibodies are out of our skin, I thought it would be good to show such as well as the progression of it as it ravages the skin. I have been absolutely strict gluten-free since Dec. of 2011. We have a gluten-free household & eat 99% whole foods. Have not eaten out at all. My dh had improved greatly upon going gluten-free & even though I still had some dh; it was nothing like what began in Sept. of 2012. I have been mostly low iodine since going gluten-free since I have found iodine to make my dh flare.

In the beginning of Sept. 2012, I began to have a spontaneous flare of dh. When it began I had no idea it would continue flaring to this day & so severely.

These first 2 photos were taken on Oct. 12, 2012.

8396010613_0c60092033_z.jpg

8397101136_3c897d5c14_z.jpg

These next photos were taken on 1/13/13.

8397122688_fd540a236c_z.jpg

8396040891_f157ab80c7_z.jpg

8397124830_53a176428e_z.jpg

8396042507_5c60904ecd_z.jpg

8396043099_5c3684216d_z.jpg

8396043589_3b2901e657_z.jpg

8396044249_cc6276d95c_z.jpg

Above shows what I call the flesh eating lesions. It starts as a tiny little water blister & I don't scratch --- it just eats away at the flesh & gets bigger & bigger & bigger. You will see more photos of this same area in the next date series. You will see what it turns into from this point.

8396045721_bd281402f6.jpg

Apparently I can only post a certain # of photos on one post so I will have to make another post to put the rest of the photos on.

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Photos taken on 1/19/13.

8397268918_25a514e824_z.jpg

Above is the flesh eating lesions you saw earlier.

8397268656_f95f1f68df.jpg

Below is the underside of my breast.

8397268718_b204fa28b6.jpg

Lesions on my front:

8397266446_ab21f97c3b.jpg

My left side up to armpit area:

8396184979_1c4d183076_z.jpg

The flesh eaters:

8397257702_f115b8f4b5.jpg

8396184957_ea5c25aef1.jpg

My scalp has been ravaged more than anything you see here.

Clothing is sheer torture to wear.

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Ditto to Squirming's pics. Mine looks EXACTLY like yours.

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Ditto to Squirming's pics. Mine looks EXACTLY like yours.

I am sorry you both have to suffer like that; it looks incredibly painful and uncomfortable. :(

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Thanks Shroomie. It does suck.

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Thanks Mushroom. :)

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Thanks squirmingitch.

I am sure a friend has dh from your pictures. I will show him in a couple of weeks when I next see him. He had negative blood test, but had been gluten-free beforehand. Great thread, thanks.

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Thanks Shroomie. It does suck.

Oh my goodness! I had the 'flesh eating' lesions on my lower belly. I really think it was several lesions side by side that just grew into each other. They have healed and now are the dark purple color.

I know you have been so strict on being gluten-free, I want to cry for you! Do you think your doctor will order light therapy for you?

Wish you could take Dapsone or maybe the topical? I think I'll have my niece take photos of my healed skin after being on Dapsone since 10/20/12. So sorry for you. . . . :(

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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
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      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
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