Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Please Take A Peek For Me?


nikaboli

Recommended Posts

nikaboli Newbie

Hello all! I'm Nichole, and I am brand new to this forum... and this is actually my first post. (hope it's okay that it is in here)

I've been struggling with many issues for over a year, well since giving birth actually. And an intensely itchy rash has been one of them. I won't get into all my other issues here, since this section is for DH, but I'll just say this much:

I finally was "diagnosed" with Open Original Shared Link by the dermatologist. She told me that it probably stemmed from eczema and that I would have it forever basically. Gave me a cream and said it would help itch and clear it up, but most likely it will come back?! Okayyy...well the cream, (and many other highly potent steroid creams I've tried, [hubby has eczema], haven't touched it.) So, I started doing my own research and found the above link I posted and that maybe the problem was DH. I obviously had never heard of it...and had never heard of celiac disease...or gluten for that matter. Started reading about celiac and was astonished....I had almost every symptom, masquerading as something else. I'm thinking this might be my problem...gluten/celiac. I'd like some of you to take a look at these pictures and let me know what you think, if you don't mind. :) I'm just not convinced that this is eczema....I currently have it on my left shin pretty bad, and small recovering spots on my right shin, both knees and upper back neck. I also have what feels like hives that break out in my scalp at back of head and temple region, but they don't itch nearly as bad as my legs.

I'm not sure where to go with all this...do I bother getting a diagnosis? For DH or celiac for that matter? I mean, if the only option is gluten free, then why bother? I'm not really interested in taking dapsone, IF I know that going gluten free will potentially clear it up. (btw, I have been gluten free for a week, and I know that will mess with the testing...I guess I just don't really plan on testing right now)

I guess I'm just looking for some input...and thank you for looking! Sorry this post is pretty choppy and scattered..but I only have so much time with a toddler running wild here! ;)

20120717_152801.webp

20120717_152829.webp

20120717_152842.webp

20120717_152927.webp

20120717_153007.webp

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

Oh you poor dear!

First Nicole, welcome to the board! And yes, it's perfectly fine that you posted here.

From reading your post you have obviously been doing your homework --- that helps so much! And it's okay to get into your other issues here --- the more you tell us the better picture we get in order to help you. It's also okay to post those things in other forums on the board but if you do then state also that you have this rash & have posted about it on the dh forum & provide a link to this post.

The big question --- is it dh? Well, IMHO it certainly is. I looked at the link you provided as well as pulling up a number of other links about "PN" & your photos don't look anything like any of the pictures of PN that I found on the net. Nor does your description of them fit. AND as you pointed out & I also read in every link I read --- PN is caused by, among other things --- DH!!!

I was shocked as your 2nd, 3rd & 4th photos so closely resemble my husbands dh!!! I have not had time yet to post his photos to the forum but it is certainly a different presentation of dh than we normally see here. And I did not get photos of my husbands while they looked quite like yours. His did that "bubbly thing" & then they erupt & weep clear, amber liquid, then crust over & that takes a long time to get rid of the crust & then the skin is a purplish color. DH can also leave white skin besides the purplish color. His presented on the top of both feet in the same spot, then on each hand in the same spot, then the lower legs mostly on the shin area & front but some on the back -- again in the symmetrical presentation.

You are presenting in the symmetrical pattern. And the intense itching is telling. And all the creams you have used to no avail. The scalp too. I get them in my scalp & yes, in the beginning mine were like hives but they became oh so much worse! As I sit here I have them over each ear where the temples of my glasses sit & they are a bear!!!!!

Read these links & they will explain much about the testing/dx process in regards to those of us with dh.

And this thread will give you some info. on what you can use to help with the itching as well as helping it to go away faster.

And you may have to go low salicylate eventually but we'll cross that bridge when & if we come to it.

This will help you with the gluten-free diet.

The only reson I would see for going for a dx is if your child ends up with suspected celiac then if you had a dx it would be easier to convince a doc to consider your child having celiac. And you may want the official dx for your child if that were the case b/c it will make things much easier at school, college & the military for that child.

And YES! dh WILL go away on a gluten-free diet. BUT it's not an overnight thing. The IgA gets in our skin & causes the rash. It can take 2 years for the IgA to leave our skin & some med. publications say up to 10 years. UGH! But the rash will get better over time on a gluten-free diet so you shouldn't be dealing with it at this level for 2 years.

Also I will mention that for places that can be covered with a band aid I & my husband have found it very helpful to put a big glob of either neosporin or the benzocaine ointment on the places & cover them with band aid. Somehow that helps greatly to keep it from itching plus serves as protection from your scratching. DO NOT scratch it please! It only makes it worse & we don't want PN!!!!

Link to comment
Share on other sites
nikaboli Newbie

Wow, first of all THANK YOU SO MUCH for you wonderful welcome and reply! You have given me a lot to read and think about! In regards to my daughter, I actually am already thinking she might be dealing with it already. She hasn't been labeled failure to thrive, (altho probably should have, don't have the greatest pedi) but she hasn't gained weight since she was 18 months, and she will be two next month. She also has a lactose intolerance, or so I believe. She has always drank almond milk, as it is the only thing she can handle without getting horrible gas and diarrhea. So, you have a really good point about me going for a diagnosis myself then! I'd kind of like to just go and get a diagnosis for the DH, and then I will know. If I go and try and get a diagnosis for Celiac, A. I'll have to eat gluten again, and B. I'll still need to get a diagnosis for the DH. But, I don't trust the dermatologist that I have already seen to listen to me about the dh, so I'd llike to find one that has dealt with this before....so that should be fun! :(

Man, I hoping I can get this under control before my scalp gets worse...should I look into gluten free shampoos too? I CANNOT believe how much stuff gluten is in!! Geesh!! And wow, your hubs ( I always wanna put DH for dearest hubby but that would be really confusing in this forum ;) ..his rash sounds exactly like mine! Crazy!!

Link to comment
Share on other sites
lovegrov Collaborator

Of course I can't diagnose you with any certainty, but those first three photos look a lot like what my DH looked like.

Link to comment
Share on other sites
nikaboli Newbie

I took so many pictures, and actually uploaded some of the crappier pics, because I was in a hurry. Something weird that I have noticed since quitting gluten, I've got a cold sore in my nose!? I haven't got a cold sore in a long time, because I can keep them at bay with lysine...but I guess I didn't catch this one in time. If it's not one thing, it's another! :/

Link to comment
Share on other sites
squirmingitch Veteran

Wow, first of all THANK YOU SO MUCH for you wonderful welcome and reply! You have given me a lot to read and think about! In regards to my daughter, I actually am already thinking she might be dealing with it already. She hasn't been labeled failure to thrive, (altho probably should have, don't have the greatest pedi) but she hasn't gained weight since she was 18 months, and she will be two next month. She also has a lactose intolerance, or so I believe. She has always drank almond milk, as it is the only thing she can handle without getting horrible gas and diarrhea. So, you have a really good point about me going for a diagnosis myself then! I'd kind of like to just go and get a diagnosis for the DH, and then I will know. If I go and try and get a diagnosis for Celiac, A. I'll have to eat gluten again, and B. I'll still need to get a diagnosis for the DH. But, I don't trust the dermatologist that I have already seen to listen to me about the dh, so I'd llike to find one that has dealt with this before....so that should be fun! :(

Man, I hoping I can get this under control before my scalp gets worse...should I look into gluten free shampoos too? I CANNOT believe how much stuff gluten is in!! Geesh!! And wow, your hubs ( I always wanna put DH for dearest hubby but that would be really confusing in this forum ;) ..his rash sounds exactly like mine! Crazy!!

I hate like heck to tell you this but EVEN for the dh biopsy you MUST be eating gluten & that means you would have to start back on gluten NOW. And THAT'S also why you see so many self dx'd with dh. There are enough self dx celiac w/o dh but WITH dh is a real b%$@# (pardon my expression).

Like the day I discovered what mine was --- there was NO WAY I was going to wait around for more weeks eating gluten & living in rash induced hell until I could 1) get a PC to make a referral to a derm 2) Find said derm who has experience with dh 3) wait till the appt. & biopsy. NO WAY , NO HOW!!!!!!! Knowing that we're on a long road to getting the IgA out of our skin --- we just don't want to prolong the agony!

Are you near a big city? I don't even know what country you're in. Try checking the forum here for doctors near you & see if you can come up with a good derm or even maybe a good ped GI. Perhaps it would be an easier course to find a good ped GI who has experience in celiac & take your daughter. There is a forum on here dealing with children --- check it out/post on it & see if anyone can give you some tips on that course.

Yes, gluten-free shampoos, lotions, soaps. Just put the key word in the search box here on the board & you'll find plenty of info. for those items. Personally, I use Suave shampoo & conditioner --- gluten-free --- also I understand Dove is gluten-free. Toothpaste --- Crest is gluten-free, Oral B stages (kids) is gluten-free, Crest mouthwash is gluten-free. I think Johnson's Baby Shampoo is gluten-free but double check me there on that one.

NO KISSING your hubs or boyfriend or whatever the case may be if they have eaten gluten or drank BEER or a gluten drink UNTIL they brush their teeth!!!!! Honestly, you can get glutened that way.

You're going to have to learn how to make sure you don't get cross contaminated (cc'd) especially if you have a shared household (gluten eaters as well as gluten free eaters). There is a very steep learning curve to this stuff --- very steep. But breathe, just take a deep breath & don't panic or you'll screw yourself up. As the Newbie 101 states --- whole foods are key for at least 3 months. That takes the pressure off you while you learn as well as giving your gut time to heal.

Oh, & it's possible that the thing in your nose is dh --- we've had ppl here who have gotten it there believe it or not. I've had it in the curves of my ears & inside my belly button --- it doesn't care where it strikes!

<div><br></div><div>OH! And one more thing --- a dx of dh IS a dx of celiac disease. You don't need to have both celiac dx'd AND dh dx'd.</div>

Link to comment
Share on other sites
Hopeful1950 Apprentice

You pictures look almost exactly like my DH as well. Mine started on my shins and my upper back and because I went undiagnosed for so long, it moved up my neck into my hair in the back, my outer arms, my behind cleavage (not sure what this area is really called :) ) and the tops of my feet sometimes.

My understanding of prurigo nodularis is that it is a result of scratching something that is constantly itching (like DH). Seems like the docs just stop at the DX of prurigo nodularis without getting to the bottom of what is causing the underlying itching and skin eruptions. Even eczema has triggers that need to be identified and eliminated. Steroid creams help relieve symptoms in the short term, but can cause the skin to become fragile and thin which invites problems later.

Your pictures look like your skin is a little raised and thickened. Mine looks like this until a lesion is done erupting. Once it is done, it will flatten out completely and stop itching and heal. Then it will eventually fade often leaving a white mark behind.

I see that the others on the forum have given you great feedback. Good luck in your quest.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



peter99ff Rookie

Hi and welcome. I have similar break outs or continuing ones that just don't leave. I hate to throw another allergy your way. I am Celiac for umm 8 or 10 years now. My family has a history now consisting of this, Crohns, a couple other things and DAIRY. Dairy I have recently unwillingly accepted has affects of being tired (also high iron does this) and hives or breakouts similar to DH, also digestive problems. Just throwing it out there. I went dairy free this morning and feel a lot better just 7 hours in. I don't want to admit it as much as add it to the list of stay away. I'm going to Chicago for the weekend, gluten and dairy free. Try it and in a couple of hours, out of your now routine schedule, and see if it works for you. Good Luck

And research iodine and dh, if you have dh stay off iodine, that means salt, sodium etc......., go sea salt

Link to comment
Share on other sites
FruitEnthusiast Enthusiast

Hello all! I'm Nichole, and I am brand new to this forum... and this is actually my first post. (hope it's okay that it is in here)

I've been struggling with many issues for over a year, well since giving birth actually. And an intensely itchy rash has been one of them. I won't get into all my other issues here, since this section is for DH, but I'll just say this much:

I finally was "diagnosed" with Open Original Shared Link by the dermatologist. She told me that it probably stemmed from eczema and that I would have it forever basically. Gave me a cream and said it would help itch and clear it up, but most likely it will come back?! Okayyy...well the cream, (and many other highly potent steroid creams I've tried, [hubby has eczema], haven't touched it.) So, I started doing my own research and found the above link I posted and that maybe the problem was DH. I obviously had never heard of it...and had never heard of celiac disease...or gluten for that matter. Started reading about celiac and was astonished....I had almost every symptom, masquerading as something else. I'm thinking this might be my problem...gluten/celiac. I'd like some of you to take a look at these pictures and let me know what you think, if you don't mind. :) I'm just not convinced that this is eczema....I currently have it on my left shin pretty bad, and small recovering spots on my right shin, both knees and upper back neck. I also have what feels like hives that break out in my scalp at back of head and temple region, but they don't itch nearly as bad as my legs.

I'm not sure where to go with all this...do I bother getting a diagnosis? For DH or celiac for that matter? I mean, if the only option is gluten free, then why bother? I'm not really interested in taking dapsone, IF I know that going gluten free will potentially clear it up. (btw, I have been gluten free for a week, and I know that will mess with the testing...I guess I just don't really plan on testing right now)

I guess I'm just looking for some input...and thank you for looking! Sorry this post is pretty choppy and scattered..but I only have so much time with a toddler running wild here! ;)

20120717_152801.webp

20120717_152829.webp

20120717_152842.webp

20120717_152927.webp

20120717_153007.webp

Hi there,

I wanted to share some info about testing and treatment that may help, as I was recently diagnosed with Gluten Intolerance and have been very sick too. I don't have the skin rash part of it, but I feel for you, it looks very uncomfortable. I tested negative on the Celiac blood test and was told by my GI that the test is not very sensitive, and that not everyone tests positive even when they do have it. My other Dr. disagreed with that opinion though. The blood test would be a good option to see what comes of it. I had already stopped eating gluten, so the biopsy option was out for me as well. Regardless, gluten is obviously my problem, as I have seen dramatic results from stopping eating it. A gluten sensitivity can make you temporarily sensitive to other foods as well. I found a Naturopathic Doctor (ND) that has been more helpful than my GI in my recovery process actually, though she is unfortunately not covered on my insurance.

The other thing is that recovery is very slow for most people when they stop eating gluten, not to bum you out, but don't be surprised if that is the case for you - it is for me. Also, lotions and other products,like laundry detergent can have gluten in them, so check the labels. If you don't know what's in some of those ingredients with confusing names, you can can call the company that makes the product - lots of people do that. Some people get a reaction from contact with flour, or even breathing in the smell of baked goods. Some things to consider.

Hope this information is helpful and hope you find some relief soon!

Link to comment
Share on other sites
nikaboli Newbie

Thanks everyone for the great information! This morning, I was starting to feel really overwhelmed by all of it...and wanted to throw in the towel and pretend I never learned any of this! ;) I got really discouraged yesterday because I shared with a friend what I have stumbled upon, and said that I'm wondering if it's celiac. She basically told me I'm nuts and that people with celiac have sever diarrhea and lose rapid weight. Well, I've never had the problem of losing weight, but that's mainly because I am always STARVING and will eat until I'm sick. I don't have constant diarrhea, but I am always constipated, and then out of the blue will have diarrhea. Been told it's IBS. Anyway, I was starting to think I'm just crazy again. Maybe all my googling has made me crazy. But facts are facts....I've never had a regular period, I've suffered miss-carriages, (told I have PCOS) I've had almost constant canker sores since I was little, I've had countless scans and ultrasounds and dr visits trying to give me a reason for the sporadic bloating and gas pain that causes me to want to roll up into a ball, been tested for RA and OA from crippling joint pain and just told to take Meloxicam to help, (btw, I quit my 5 diet coke a day habit and the joint pain is basically gone) And I don't have to mention the DH...to me that's a dead giveaway. Anyway, my point is...I'm not crazy. I'm suffering and I want answers. But I also don't want to be seen by a doctor that will also think I'm crazy. BUT...today I think I may have found a doctor onlline that I'm willing to pay a million dollars to if she can help me!! Here is the link, check it out and see what you think:

Open Original Shared Link

She isn't labeled a ND, but that's pretty close to what she is!! I'm really really excited about finding this, but now I just have to decide if I wanna make the call and go in. I just DON'T want to go back on gluten. At all. I know I'm only a week or two into this, but I don't wanna start over. :(

Also, as far as the dairy thing goes...I think I'm gonna have to ditch that too!! My coffee gives me instant diarrhea in the morning...and ice cream does the same thing. :(

And I never even thought of the thing in my nose being DH! Duh...also...I get it in my belly button and below too! And looking back, I think I've got it on my face too. I used to get "acne' that itched like a mother jumper and crusted over...just like this crazy rash!

Okay...sorry for the rambling again..and thanks so much for all your help! It's been wonderful to talk with people who don't think you are nuts!! :)

Link to comment
Share on other sites
squirmingitch Veteran

Everything you have described IS consistent with celiac! Your friend doesn't know what she's talking about just like so many doctors don't know. We've had umpteen hundred overweight ppl here who have been told they can't possibly be celiac b/c celiacs are skinny. THEN we've had another umpteen hundred ppl on here who are skinny who were told they are just anorexic b/c celiac is RARE. 1 in 130 ppl is NOT rare!

TRUST YOURSELF!

No one knows your body like you do --- NO ONE.

And expect lots more ppl to be skeptical & they will ask you if you have a Dr. dx. You know what? Just tell them you do. Shut them up. The riot is THEY probably have celiac & don't know it.

There is also something known as "silent celiac" where the person has NO outward symptoms at all but still the damage is being done inside them & it's real. There are a # of them on this board who found out completely by chance getting tested for something else. Furthermore, ppl with dh tend not to have GI symptoms or GI symptoms which are not severe --- that's b/c it's in our skin but our guts are still being damaged.

Link to comment
Share on other sites
eatmeat4good Enthusiast

Oh my God, I can't believe I missed this until now.

Those are absolutely perfect pictures of DH!!!

Including the white de-pigmented skin where lesions used to be.

This is exactly what DH looks like. These pics should be in the Medical Textbooks.

Please post them in the DH photo bank thread if you haven't already.

Thank you for sharing your story and your pics.

My leg had these lesions and then my face.

But the blistery, swollen Hive-Like appearance with clusters of lesions is exactly what Celiac DH looks and presents like.

I can almost see the stinging, painful, itchy-burning sensations you must have.

You are right on with your suspicions that you have Celiac.

I'm sorry you have suffered for so long.

Please post your other pictures too, because if these are the bad ones...how perfect are the other ones?

Welcome to the forum!

I have no opinion about testing...other than I think you just diagnosed yourself and your life will start to get so much better now!

Link to comment
Share on other sites
squirmingitch Veteran

I second eatmeat's emotion. Please post your photos to the dh photo bank thread.

Link to comment
Share on other sites
nikaboli Newbie

I added my pics to the photo bank thread..and few new ones. I looked through my other pics, and they basically were the same..I guess I thought I had more, and I think I did but deleted them. I don't like my nasty rash pics accidentally popping up on my phone! :P

Link to comment
Share on other sites
squirmingitch Veteran

I think none of us like our nasty rash pics no matter where they are stored. I had a major aversion to taking photos of my rash especially when it was at it's worst.

Very glad you posted your photos! It will help future newbies to dh. Thank you.smile.gif

Link to comment
Share on other sites
peter99ff Rookie

Well, good luck to you. Study and learn. Diet Coke has gluten in it. It takes time to build up as well as leave the body (usually 6-8 months to exit). I just did a weekend in Chicago to meet up with my Daughters. Trip was great, with "Find me gluten free" app. Got home and went to Chipotle and had tacos with sour cream and cheese yesterday. Yeah, Im done with Dairy :) Again good luck and hang in there. The Insanity is just temporary. Study

Link to comment
Share on other sites
sa1937 Community Regular

Diet Coke has gluten in it. It takes time to build up as well as leave the body (usually 6-8 months to exit).

Would you please provide a source for this info.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      2

      Sarah Grace

    2. - trents commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      8

      Do Omelets Contain Grain, and Are They Gluten-Free?

    3. - N00dnutt commented on Jefferson Adams's article in Gluten-Free Foods & Beverages
      8

      Do Omelets Contain Grain, and Are They Gluten-Free?

    4. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      2

      Sarah Grace

    5. - Sarah Grace posted a topic in Related Issues & Disorders
      2

      Sarah Grace


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,057
    • Most Online (within 30 mins)
      7,748

    Ellenlou
    Newest Member
    Ellenlou
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @Sarah Grace, I had symptoms like yours.  I thought at first it was hypoglycemia, but having type two diabetes, my blood glucose meter didn't register a low.  If anything, my blood glucose levels were slightly high, but quickly returned to normal with me stirring around after waking.   I was certain dehydration, having similar symptoms, was not the cause.  A nurse advised me, a very long time ago, in order to stay well hydrated that one should drink a cup of water every time one visits the loo.  Drink sufficient water to have to make that visit about every two hours during the day.  The quick pinch test confirmed no dehydration.  If you pinch the skin on the back of your hand or arm, and the skin stays "tented" and takes a few seconds to return to normal, you're probably dehydrated. My problem turned out to be high histamine levels.  Our bodies can make histamine.  Plants and other animals make histamine, too, and, so there's histamine in our food.   Mast cells in our digestive tract make and release histamine as part of the autoimmune response in celiac disease, causing inflammation.  But, among doing other things, histamine is also a useful neurotransmitter.  Histamine levels increase in the brain in the morning, causing us to wake up.  High histamine levels can keep us awake, too, hence insomnia.  High histamine levels also can cause migraines.   Intestinal Bacteria can also make histamine and release it, which can then be absorbed into our bloodstream.  High histamine levels can worsen gastrointestinal symptoms.  If you eat a diet high in carbohydrates, those carbohydrate-loving, histamine-producing bacteria can colonize the small intestine, resulting in Small Intestinal Bacterial Overgrowth (SIBO).  Following a Paleo Diet (a diet low in carbohydrates) starves out the SIBO bacteria.   Eating a high carbohydrate diet can precipitate a Thiamine (Vitamin B1) deficiency disorder.  Thiamine is required to turn the carbohydrates into energy for the body.  Having SIBO can indicate an insufficiency of Thiamine.  Thiamine has antibacterial and antiviral properties and helps keep bacteria in the gut within check.  Thiamine helps Mast Cells not release histamine.  Mast Cells that do not have sufficient Thiamine release histamine at the slightest provocation.   Our bodies can break down histamine, if it has enough of the vitamins and minerals needed to make an enzyme, Diamine Oxidase (DAO).  Pyridoxine B6, copper, and Vitamin C are needed.  DAO supplements are available without prescription.  Vitamin D helps lower and regulate inflammation in the body.   Vitamins and minerals such as these can be at suboptimal levels.  Inflammation in the intestines can make absorbing essential nutrients like Thiamine difficult.  The eight B vitamins are water soluble and cannot be stored long, so we need to consume them every day in foods and supplements.  Thiamine can become low within three weeks.   Supplementing with vitamins and minerals helps boost absorption so the body can function properly.   Always check with your doctor and nutritionist before supplementing.  Checking for nutritional deficiencies is part of proper follow up care for people with celiac disease, even if they've been gluten free for years.    References: Histamine Intolerance: Symptoms, Diagnosis, and Beyond https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11054089/ Dysbiosis and Migraine Headaches in Adults With Celiac Disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9506300/ Histamine Intolerance Originates in the Gut https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8069563/ Thiamine deficiency disorders: a clinical perspective https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/ Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9147846/ Mast Cells in Gastrointestinal Disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/ Mast cells are associated with the onset and progression of celiac disease https://pubmed.ncbi.nlm.nih.gov/27619824/ Diamine oxidase supplementation improves symptoms in patients with histamine intolerance https://pubmed.ncbi.nlm.nih.gov/31807350/ Histamine Intolerance—The More We Know the Less We Know. A Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8308327/ Hope this helps!
    • trents
      Have you tried a diet with a lower carb, higher fat content, something similar to the Keto diet? Are you familiar with the ketogenic diet? Fat satisfies and so curbs hunger and levels out blood sugar.
    • Sarah Grace
      I've was diagnosed celiac over 10 years ago when in mid 50s.  For a long time I have been getting headaches at night and in the morning and I suffer a lot of insomnia.  The headaches can be very severe and sometimes develop into a full migraine but other times they wear off within an hour of getting up and eating breakfast.  I have self diagnosed this a hypoglycaemia.  The medical profession in UK, where I live, does not seem to know anything of this and simply tests me for diabetes, which I do not have.  I know this condition is diet related and caused by carbohydrates, I avoid eating in the evenings.  Whatever I do, this condition seems to be getting worse and is very difficult to control.  Any advice would be much appreciated.
    • trents
      But that's the point Scott is trying to make. It is up to you. You do not have to go forward with another biopsy simply because your doctor wants you to. They work for you, not the other way around.
    • Jammer
      Hi Kate,   I am unsure if this is helpful or not. I have Webber calcium citrate everyday. I also react to less than 20 ppm of gluten. I have not reacted to Webber ever. (Fingers crossed it stays that way). Also, I get my blood tested every 6 months to ensure I have zero gluten exposure. It consistently comes back negative(0) to gluten.  A few years ago, my stomach would feel nauseous after taking Ca+  but thankfully that doesn’t happen anymore. Good luck and I hope you find something that works for you.    all the best,    J 
×
×
  • Create New...