artistsl
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My dermatologist told me it can take 3-4 biopsies to get a positive reading. She also told me to call her as soon as a blister starts to form and she will biopsy. It only takes 2-6 hours from when I eat gluten to when a blister starts to form.
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This is exactly the information I needed! Thanks guys!
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Fascinating. My symptoms are all extra intestinal (joint pain, DH, fatigue, brain fog) and I have been performing a gluten challenge lately. I too have noticed that there are some things that don't bother me as much. For example, I can eat some cheap store bought bread and react with DH and joint pain within two hours. I had a kaiser bun at a restaurant and the DH showed up after six hours with hardly any joint pain. Then much to my surprise I had a slice of pizza and pasta from Whole Foods and seemingly had no reaction at all, no DH at all!, which has now made me question whether it is even gluten that I am sensitive to. Could it be an organic vs non organic thing?
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I have had an incredibly itchy rash on my knuckles since 2004. It drives me nuts. Keeps me awake at night sometimes. I went gluten free and after 6 months on this new diet the rash disappeared for the first time in 13 years! I was amazed. My annoying rash along with joint pain, fatigue and brain fog just totally disappeared. It was like I had stumbled upon a great new world. I then read about something called DH and how if you suspect gluten sensitivity then your rash should be biopsied. So I visited with my dermatologist and she said that she will perform a biopsy. She told me to eat gluten and then call her when the area starts to form a blister. I've read about gluten challenges and how you need to eat gluten daily for 12 weeks or some crazy amount of time for the antibodies to show in your bloodwork. Typically when I eat gluten it takes only 2-6 hours for my rash to form a blister (they are tiny blisters that look like poison ivy). My dermatologist told me that sometimes it can take 3-4 biopsies in order to test positive. So my question is do I need to eat several weeks worth of gluten in order to test positive for DH? It takes one piece of bread for me to form a tiny blister and she said to call her when the area starts to form a blister. I'm afraid that if I don't eat enough though then it may come back negative.
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On 5/27/2017 at 4:25 PM, Glutenfreebacon said:
Hi,
my history is the following:
I used to eat a lot of foods with gluten & cheese together.
They would make me seriously happy and and I was extremely content just eating a pizza and bread with cheese and things like this...
Now obviously I'd have cycles... where I eat tons of gluten/cheese foods in combination... feel super content and thats it...
Then the effects would wear off and I had to start a diet.. where I'd do modified versions of fasting or so for a few weeks...
During that phase I'd get very depressed... but after a few weeks of no-gluten... I'd eat bread with cheese again and I felt like I was in heaven.
I'd get extremely high from this stuff... like seriously I'd feel amazing... (I guess it's the morphine like effects of this foods)
but after some when I hit age 22 or so I started to get serious trouble...
....
I started getting serious neurological issues from it... like I could't put my words together... I'd have paranoia & feel like everything is unreal... I've been diagnosed with numerus psychiatric issues since then...
My main problem right now is that my brain isn't functioning...
I can't comprehend what people are saying and when I want to say something my words don't come easily... Like if I am in a conversation for a longer time this issues is barely noticable at all...
But if I wake up... and I try to talk... there's no way.. if I haven't talked for a while it's like you could ask me and I couldn't comprehend what you say and couldn't put my words together in the way I'd like to...
I feel kinda stupid sometimes... because I know I'm rather smart but when I have a conversation my speech seems very unsophisticated...
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I tried to change my diet.. with varying success... like I would feel great in the morning and feel completely depressed in the evening for no apparent reason whatsoever... at all!
And I feel I can attribute this to traces of gluten which feels like this:
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When I have traces of gluten inadvertently...
I suddenly feel like everything is kind of unreal around me... I feel depressed in a "opiate withdrawal" kind of way...
I don't know how to explain it... it's just painful in the sense that I can't just enjoy having a conversation... like I have a conversation but I don't feel "the thrill"... everything is totally bland and I just feel depressed in the background... like I don't want to do anything and no matter what I do.. it feels completely pointless because I can't comprehend why I suddenly feel this way...
And it's not like I feel this way 24/7... that's the thing... it comes and goes and comes and goes... sometimes I feel completely fine in the morning or even for 2 days or so.... and then I feel completely like s$#& and devoid off all satisfaction for 3 days where I feel I'm going completely crazy & I can't talk.. can't comprehend... feel super weird when talking to people... and then the next days I just feel suddenly "normal"... like this relaxed and easy-going feeling in your body and wanting to be social and to communicate and just have fun... but then... when I eat some food and I feel it has gluten.. it hits me in a subtle way... where I suddenly loose all joy in life for days... and then it just dissapears... I've been struggling with this for years now and I can't seem to comprehend or get on top of this issue...
Do some of you guys have similar experiences?
Do you still consume gluten and/or dairy? If so, I highly recommend that you eliminate both entirely. That includes anything with the ingredients; whey powder, casein, "lactose free" can be misleading as well. I also recommend taking a good probiotic regularly.
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I use Garden of Life brand for Mood. I buy it in the refrigerated section at Whole Foods. I also recommend double doses of B vitamin for a stint.
However, you should have a full work up done by a neurologist, if you haven't already. Assuming everything comes back negative then I highly recommend trying these few things.
I hope you can find answers and start feeling healthy again.
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2 hours ago, Rosemilyd said:
Hello I am asking for my husband seeing as how I'm the one who tends to him ha ha! Has anyone had trouble getting diagnosed with gluten issues ? My husband's doctor seems to think he could have MS or gluten issues wondering if anyone is in the same boat.
If everything comes back negative I urge you to try avoiding gluten anyways. My son tested negative for celiac, twice, but we tried eliminating gluten anyways to see if it would help. He is now completely cured from his movement disorder and psychiatric complications. We've been to the Mayo Clinic to try to find answers. They said they don't understand the mechanisms behind it or what biomarkers to look for, but have since offered to do a gluten challenge and then a spinal tap. I guess they would like to see whether they can find the antibodies in the spinal fluid. My son is five years old so we're going to hold off on attempting an invasive procedure for now. But maybe that's something your neurologist may want to consider. Either way, I feel you have nothing to lose from trying the diet elimination. There is only the potential for gain. Good luck to you guys in finding answers.
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3 hours ago, LaurainAZ said:
Hi everyone,
I was diagnosed with Celiac Disease several years ago in 2012 (though I've had several doctors go back and forth, some say it's Celiac, some say its a gluten sensitivity - regardless when I eat it I often get so sick I'm bedridden for a few days and I get skin rashes and joint pain). I also had thyroid disease and thyroid cancer, and had my thyroid removed in early 2013 and was also diagnosed with PCOS around the same time. At first I started to get better after going gluten free and then having my thyroid removed and going on Synthroid to replace the hormones. But in late 2014 and early 2015 I suddenly became really ill with GI symptoms and this persists until now, almost 3 years later. The weird thing is this all started with the first menstrual cycle I had had in 5 yrs (I suddenly had a period without having any for 5 years THE DAY BEFORE all this started - TMI, sorry for that, but I think that it's related, though most docs don't seem to think it's significant.)
It started in Dec. 2014- I was having intense abdominal pain and frequent (frequent is an understatement) diarrhea (again, TMI, I know), and even had pain in my upper abdomen as well as my lower. I also had joint pain, some shortness of breath and pain in my back as well. After a couple of weeks it suddenly got so bad and I was so dehydrated I was hospitalized even though they couldn't tell me what the cause was - the best they had was that it was some sort of infectious colitis. The pain was so intense that I thought I might have even had a kidney stone. After this, I started getting sick when I ate almost anything in general, even if it didn't have gluten in it, and I had to go to the hospital a few more times for the same reason. Most of the time I was told it was just gastroenteritis (even though I was so dehydrated my lips were gray and I couldn't walk, and I'm pretty sure that no one gets gastroenteritis about every 2-3 months, which is how often I was ending up in the ER), and if they didn't tell me it was gastroenteritis I was told it was IBS.
I've had all the tests done, stool sample, colonoscopy, 2 endoscopies, CT Scans, pelvic ultrasounds, everything - and they never find anything significant. However, The IBS diagnosis doesn't sit right with me - I feel inflamed and have dangerously low levels of vitamin D which is a marker of inflammation, and I've had other autoimmune disorders - in fact autoimmunity runs in my family. So far all they've found is "mild inactive gastritis. I also got diagnosed with diverticulosis, but they said it wasn't infected to become diverticulitis, so it still didn't give me answers. Since then I've been trying to get answers, but all anyone ever tells me is that I have IBS. - I should probably add after all the GI ER visits I had I also started having alot of issues with kidney pain and was diagnosed with a kidney infection once, though I'm pretty sure I've had that at least twice.
Right now my symptoms are:
- that I'm frequently nauseated for most of the day, and I often avoid eating.
- Diarrhea
- Extreme fatigue
- Abdominal pain
- Sometimes I still get the kidney pain
- Constant Pelvic pain
- Joint pain
- Lomotil is the only medication to give me any relief, and it's basically just prescription strength Immodium - it doesn't always work, but a lot of the time it does. I have abdominal pain all the time, usually sharp and stabbing or dull and achy.
Since things aren't showing up on tests it starts to feel like maybe you're crazy - but it most definitely is happening to me and has been for years now. Can anyone else identify with this situation?
Could it be endometriosis? My sister was diagnosed with PCOS. Her pain was so bad that she finally decided to have her ovaries removed. They realized during the surgery that she has endometriosis. She also deals with Hashimoto's and wouldn't be surprised in any way if she were gluten sensitive.
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2 hours ago, amandauher said:
Hello! I have no idea if I have celiac disease, but I have scheduled an appointment to be tested for it. Honestly, I'm grasping at straws here -- desperate for some sort of answer to what is wrong with me. I don't have the GI/digestive issues most people describe (aside from being bloated). I had blood work done at my physical about 6 months ago, and my a/g ratio is above the normal range, which my medical training tells me (just kidding -- I googled it) MIGHT indicate celiac. I never even considered that before, because, like I said, I don't have lots of digestive issues or diarrhea, etc. But according to celiac.org (again, I know, I am practically a doctor), only 1/3 of adults have digestive issues as their symptoms. More commonly (they say), adults will have depression/anxiety, skin issues, and other symptoms. (Depression + plaque psoriasis on my hands are the current issues I'm facing.) Soooooo, that info + the elevated a/g ratio has led me to, "Hey, why not get tested for celiac?"
**So, here are my 2 questions for all of you who, unlike me, actually know what you're talking about:
1. Do you really think it's possible that I could have celiac and that bloating would be the worst of my digestive "issues?"
2. I tried cutting out gluten as an experiment to see if it would calm down the psoriasis flare-up I've been experiencing. My diet has been gluten-free for the past 3 weeks (with NO change in my symptoms, for whatever that's worth), and my doctor's appointment is in 10 days. I understand that I need to actually have gluten in my system to have an accurate test result. Seeing as I only cut it out for 3 weeks, do you think that re-introducing it now until my appointment will be enough for an accurate result? Or do you think I need to wait the whole 6-8 weeks I've seen others talk about?
Thank you so much for taking the time to read all of this -- any insight or advice from your experience would be really helpful for me.
I have yet to be diagnosed, but have had psoriasis on my hands and it took about 6 months gluten free for it to get better.
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My son experienced auditory and visual hallucinations, insomnia, emotional lability, sensory processing issues, steropathy, constipation, bloating, episodes of confusion, episodes of speech deficit, etc. His symptoms nearly disappeared after going gluten and dairy free (despite negative celiac results). The steropathy was our only seemingly lingering symptom and that has since gone away after adding high dose of vitamin B12. He also takes a multi strain probiotic which helped tremendously.
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On 4/15/2017 at 6:21 PM, Hellodee2 said:
I had patches like that on the back of my neck. Doc gave me a steroid cream and told me it was eczema and sent me on my way. The cream worked and now I only get small patches here and there. I've been diagnosed Celiac for 10 yrs and that happened after 2 years gluten free.
My son had severe eczema from dairy sensitivity. Might want to look into other possible food sensitivity.
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On 8/23/2008 at 0:25 PM, lmrf said:
I recently have discovered I have a gluten intolerance after suffering for many years and been mis-diagnosed with other ailments. I have been gluten free for about 6 months now. After a colonoscopy was told I have developed diverticula, but have not actually had any problems with that (not yet). This week I had an acute pancreatitis attack. A CT scan showed an enlarged pancrease. Can the pancreatitis and the diverticula be related to my gluten-free diet? I did not have these before. Now, I've been told to eat a high carbohydrate diet for my pancrease while staying on a seed and nut free diet for the diverticula. How can I manage this high carb diet while managing a gluten free diet? I though that gluten foods are carb foods. What choices do I have left? I'm confused!!
My son is very gluten intolerant and we were referred to allergy. I read recently about Eosinophilic disease which is a food intolerance that causes inflammation in generalized areas of the body. I believe there is a condition called eosinophilic pancreatic disease. I read about a 6 food elimination diet to treat the disorder, which includes gluten, but also dairy, egg, peanut and shellfish. You may want to consider other possible food sensitivities.
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When we went on vacation, I prepped and packed herbs and spices into individually labeled sandwich bags and brought a crock pot with us. I used the hotel microwave to cook vegetables. We also purchased light weight plastic camping bowls, plate and sporks. A lot of prep work was made, but turned out very rewarding. I just wasn't ready to test out restaurants.
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I need to touch base with our neurologist at Mayo to see whether he tested homocysteine. Do you know whether that was performed through bloodwork? We traveled to Boston to enroll in a research study looking at genetics of schizophrenia. The doctor who enrolled us advised that we continue to go gluten free. The mechanisms are not understood, but the removal of gluten from the diet is thought to alleviate some kind of inflammatory response. Mermaids Mom, does your daughter have thyroid issues? Has she recovered from her neuro issues after having gone gluten free?
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Interesting. My son experiences neurological and psychiatric issues caused by gluten yet he tested negative for celiacs. He also tested negative for B vitamin deficiency. Despite testing negative for celiacs I decided to place him on a gluten and dairy free diet. His symptoms improved 95%. I started giving him B12 supplement despite testing negative for deficiency and he has improved yet again. I also have him on a 14 strain probiotic. Are there any other supplements that you guys recommend besides B12? I'm just winging it here. We've traveled to Boston and Rochester and no doctors have been able to help us with an explanation or diagnosis so I lean on your knowledge and experience. Thanks in advance.
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In November of 2016, my four years old son suddenly began to suffer from severe keratosis pilaris, constipation, bloating, frequent burping, fatigue, insomnia, auditory and visual hallucinations, episodes of confusion, balance issues, strange finger posturing (steropathy), sensory processing difficulties and major personality changes. We travelled across the country to seek medical help. He has been seen by three neurologists and dozens of other specialists. Every test performed came back negative (encephalitis, celiac, B vitamin deficiency) and ultimately we were referred to psychology for anti psychotic meds. The only indicator that something wasn't right medically was his thyroid tested high and we were told that he probably had a cold at the time of the test which can cause the thyroid to elevate.
I removed gluten from his diet as I was desperate to try anything. After two weeks entirely gluten free he was able to run, play, laugh, sleep soundly through the night. He no longer experienced hallucinations, insomnia, constipation, bloating, strange finger posturing, etc. It was as if we had a normal four years old boy again! Nearly all of his deficits went away after four months gluten free and return and last for days upon the slightest gluten exposure (at least four separate incidents of exposure due to very loose snack rules at school). His thyroid was retested and all is within normal limits. I just recently started giving him vitamin B12 (thank you posterboy for sharing info on this topic). Despite his bloodwork not showing B vitamin deficiency, that seems to be helping with those very minor lingering symptoms. Hoping that's not a placebo affect.
So Feeneyja, regarding diagnosis I am in the very same exact predicament as you. Any exposure to gluten and my son can hardly function at school (for days). We have traveled to Mayo Clinic to see a neurologist and the best they could do was refer us to allergy for a food challenge. They thought that GI wouldn't be able to help. We can't afford to travel back and forth to Mayo for iffy results. I'm looking for a top doctor who is familiar with this type of presentation and perform a thorough clinical assessment perhaps allowing for a diagnosis.
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On 2/14/2009 at 5:37 AM, mamatino said:
I have an 18 year old that was diagnosed with schizoaffective disorder at age 12. After seeing a prominent neurologist/psychiatrist/pharmachologist we began having various testing done to rule out an organic cause (which this doctor believes is causing the psychosis). His primary care doctor got on board and ran a bunch of blood work and it shows he has a double gene for Celiac and is severely allergic to gluten, wheat barley, rye, etc., and also to milk, eggs and corn. Another more detailed allergy test is being run to get a clear picture of exactly what else needs to be removed from his diet.
I've seen several sites on the internet that connect Celiac with schizophrenia. Has anyone had psychosis disappear after going on a gluten-free diet?
Yes, my 4 year old son experiences the same symptoms. All neurological in nature. The hallucinations, insomnia, strange finger posturing, etc go away when gluten is removed from his diet and come back when gluten is reintroduced into his diet. We are currently gluten free and living a normal life again (until he eats a handful of cheese its at school because he just can't resist the temptation). What specialist do you see to have the full food allergy panel performed? A gastroenterologist? An allergist? We have given up on our neurologists who have completed the full extent of their medical work up and referred us outside of their department so that he can be placed on anti psychotic meds.
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I'm interested in following this post as we are in the same boat pertaining to my 4 yo son. His presentation is purely neurological and manifests with a multitude of symptoms that affect cognition, motor, speech and more. The symptoms disappear when gluten is removed from his diet and reappear when gluten is introduced into his diet. We have seen two neurologists who have failed to recognize this as a true condition.
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22 hours ago, GFinDC said:
Hi,
Gluten ataxia is the term for the brain affecting condition in celiac disease. It can cause a variety of neuro symptoms, including difficulty walking. If seems like recovery from nerve related issues can be slower than some other types of damage. The immune system is very powerful and doesn't give up on a fight easily. So it takes time for the immune system to settle down and stop attacking the body.
I suggest that new people on the gluten-free diet concentrate on meats, veggies, nuts, and eggs. Avoid dairy and anything processed for a few months at least. That way the person has time to learn the in and outs of the gluten-free diet. The processed foods are more "risky" than whole foods are. Even gluten-free processed foods are not great because they usually have lots of carbs and sugar, which is bad for the gut flora recovery. Dairy si often a problem at first because the enzyme to digest dairy sugar (lactose) is made by the tips of the villi. Those villi are (temporarily( destroyed by celiac disease. So dairy can be problematic for beginners. After some months recovering, dairy may be ok. It all depends on the individual, some people never have a problem with dairy.
Another thing to be aware of, is that about 10% of celiac have an immune reaction to oats like they do wheat. rye, and barley. So it is best to avoid oats for a few months at least, just in case.
I can't thank you all enough for everything. You wouldn't know whether there is any common medical treatments for this gluten ataxia such as immunotherapy (IVIG or plasmapheresis, steroids)?
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On 3/14/2017 at 6:46 AM, ironictruth said:
You mentioned doing a neuro work up in Boston. There is also a Celiac disease Research Center At the Pediatric Hospital in Boston at Mass General. Why don't you give them a call?
In fact one of the docs there is well-known. Alessio Fasano. In some of his writings he references TTG 6 which is an antibody that is associated with some neurological issues. I believe they were doing studies on schizophrenia and brain inflammation. But I have also seen studies have TTG 6 antibodies being associated with symptoms that mimic ALS. vaguely, I believe I had seen something about how there is not always intestinal damage in these cases. I also read a story somewhere I believe about Fasano meeting a child with autism who ended up having celiac disease. They put him on a gluten-free diet and he was able to regain a lot of skills.
It would be nice for you to know for certain. Trust me I am going through a lot of weird symptoms myself right now and one of them is an on-and-off extreme pressure feeling in the brain. Not a headache, but more like an internaL vice squeezing. it makes my eyes feel like there's a tremendous amount of pressure behind them as well. not knowing for certain will always leave you guessing and wondering and waiting for the next moment when things are going to get worse. at least if you have some reassurance diagnostically he may be more comfortable dealing with the strange symptoms as they come. I would definitely encourage you to call.
Thank you so much for the reference and the details regarding the specific subset of this disease that we may potentially be dealing with. This is the exact issue that I am trying to understand better. Truly grateful for the information.
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On 3/14/2017 at 11:10 AM, ravenwoodglass said:
Perhaps the doctor that told you to continue on the diet might give you the official diagnosis so he can get the accomodations he will need to have in school?
That is a great idea! Thank you! By the way, I had no idea that you would even need to have a doctor order for the school to acknowledge a specific dietary need. That is extremely important information. Thank you so much for everything. This all is incredibly overwhelming and this website is just a blessing.
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7 minutes ago, kareng said:
If you click on someone's picture, you will see their profile. That will tell you the last time they logged in to the forum. In this Charlie's case. Looks like 2 years ago
Thanks!
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8 minutes ago, kareng said:
That's good - the part about going to a doctor or two. It's a shame they didn't test for Celiac before advising you to take him off gluten.
You wouldn't believe the number of people I see in my " real" life that take kids off gluten as a magical cure and never consult an actual MD for very real problems.
I'm realizing I probably didn't want to share too much detail on my above post, but it seems I am unable to delete or make edit.
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35 minutes ago, kareng said:
Did you take your child to a medical doctor before making him gluten-free? This sounds serious. Hopefully, you had him tested for Celiac before you took him off of gluten? At least then you will know if this is Celiac related nerve issues or to look for something else.
He's had an extensive neuro work up. So far everything has come back negative and for lack of better answers we were told the dilated pupils are likely just a tic disorder. The psychologist who we met with advised to continue with the gluten free diet. We've seen much improvement on the diet. So much so that we can't imagine going back to gluten.
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On 11/29/2014 at 11:12 PM, charlieroseburns said:
Thanks for your posts! Before this I tried joining some Facebook support sites but there wasn't much talking going on. This site has a great community!
Going to make an eye appointment tommorow and see if they can give me an answer.
I'm have spent most of today browsing and learned a lot!
I know you posted this years ago, but I'm hoping you're still active on here. I'm writing because my 4 year old son has experienced some sudden neurological issues. We pulled him off of gluten and all of these symptoms seem to be going away and/or getting better, like weird finger posturing, sleep disturbances, mood instability, etc. However, since we've been gluten free (it's been 6 weeks) he's since started experiencing brief episodes where his pupils will become dilated and once noticed an episode where he experienced constricted pupils. He touches the area around his eyes when this happens, as if it may bother him, but when I ask him whether his eyes bother him he ignores my questions. Do you still experience dilated pupils? Did you ever end up seeking an opinion of an optimologist??
DH biopsy question
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