artistsl
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Thank you Matt! Those were some kind words. Let me take it all the way back. I am currently 35, at 26 I had my third baby. During that pregnancy I started to develop this rash on my legs. Specifically behind my knees. It was the itching that would wake you from a dead sleep. My family doctor at the time suggested fleas, bed bugs, and scabies. He has very sure it was some kind of bug bite. They would not go away no matter what I did, until after I had my daughter. Then I would see one or two clusters once in awhile. During that time I learned not to scratch or they got much worse. Breaking open the blisters meant it would have to heal which took longer.
I noticed around 29-30 that I seemed to get them when I started a new diet, as I was prone to do after having my children. At that time i tried my own variation of the elimination diet and thought maybe I could not eat nuts. My family doctor order an allergy panel. This panel said I was allergic to trees and a light allergy to wheat. He was very insistent that it was not the same as gluten though. He did insist however that I carry an epipen and stay away from nuts, based only on my hunch.
This last fall I start a ketogenic diet. I felt great and was losing weight. I had a cheat day here and there and encountered the worst (what I call a flare) since my last pregnancy. I took prednisone on 4 separate occasion at the advise of my family doctor, including a shot. These blister rashes would not go away. I made an appt. with a functional Medicine Clinic and felt like I was finally heard. The first thing she asked was about Celiacs. We did not test for it that day, however, we did a huge amount of bloodwork. I started their elimination diet and my skin cleared completely up. I maintained that diet for 1 month then fell a little off the wagon at an anniversary dinner. The rash started again. I maintained gluten free despite that 1 oopsie and I requested a biopsy. That biopsy was negative. I have included some of my bloodwork results below but not all of it. I do not know my family history on my father's side. My mother's side does not have any evident autoimmune. I do however have keratosis pilaris.
Please ask me any questions!
Fasting Bloodwork
Glucose 108 mg/dL
DHEA-S 409.1
Vitamin D 12.2
No allergies to Nuts
Did they perform biopsies to look for EOE? It can occur anywhere in the digestive tract. It’s an allergy response that occurs in your digestive tract. Blood work can be negative, but biopsy can be positive. You mentioned environmental allergies so that got me thinking.
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I hope they did biopsies to look for EOE. It can occur anywhere in the digestive tract, not limited to the esophagus.
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Has it helped at all? I'm no expert but I'm interested in what research has been done into the effectiveness of probiotic strains, mainly in relation to my milk allergy which seems to be histamine mediated at least in part. I'm currently wading through this paper: Open Original Shared Link and Chris Kresser's site has an overview which does have some useful links: Open Original Shared Link
I feel like it helps with anxiety. He's had antibiotic exposure while in the womb, and four occasions prior to age four. I believe there is definitely something to it. Have considered and will likely try an at home FMT.
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I can only guess how hard this has been for the three of you. I hope one day he can get at least some of those back. Have you looked at probiotics?
He is taking Garden of Life for Kids which contains 14 live cultures. I tried giving him coconut kefir, but that backfired on me due to the unknown coconut sensitivity.
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Here's a thing to try that hasn't been posted yet: Dark or Tart Cherry Juice. Not from concentrate, there is a brand that is just straight juice. It has a laxative effect if you drink too much. For me, too much is a regular size glass. Tastes a LOT better than apple cider vinegar (if you aren't a fan of bitter or sour tastes) and along with the magnesium, it seems to help. Besides, if you buy a bottle and it doesn't work, you haven't put anything bad or artificial in your body, so what could it hurt, right? :-)
We use pure cherry juice with our snow cone machine. Makes for a nice dessert after dinner.
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Garden of Life brand Dr. Formulated Organic Fiber. It's certified gluten free. Also free of psyllium husk, dairy and soy.
Also found that just simply increasing fiber intake works wonders. Perhaps try skipping a protein for at least one meal and fill up on veggies and fruits.
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Hello, Thank you for reading my post and any feed back anyone can give. I apologize ahead of time if it's a little all over the place. I recently have had an exposure to gluten and it fully effects my brain function so I am a little all over the place.
Well, I am 29 years old and I was diagnosed with Celiac Disease almost 5 years ago. My processes of discovering I was Celiac positive mostly involved my arthritis in my knees, however, after the diagnosis and removing gluten completely from my diet, I realized how much it affected my brain function. I went from a really depressed, bipolar, suicidal person to someone who is smiling, laughing and truly happy a majority of the time.
The biggest things I have run into after my diagnosis are memory loss or lack of memory, and significant mood changes if exposed for too long, both of which are really hard for me to explain to people, especially friends who may be dealing with my faults directly. Most of the time I am really good about my diet. I try my hardest to not eat out, clean the counters before I make dinner, and avoid all gluten products. I also tend to not eat gluten free products either and I don't drink. So being exposed to gluten for a long enough period of time for my brain to be struggling is a big deal for me and frankly pretty damn scary.
My doctors have done many tests in the past couple days, the most important one for this subject is the scan of the function of my brain, or lack there of. Right now my brain's function has diminished about 25% of normal, some parts are over compensating and other parts are pretty much not working correctly. I am having a hard time fighting my own demons, convincing myself that people believe I am some awful person, when I know for a fact that none of those words have been said to me, especially lately, yet I conjure up that that is what people think.
Anyway, I am in search of some help, mostly people I can talk to that may be experiencing the same thing. How do you explain to people you are struggling with a mental disorder that is controlled simply by what you eat, when you know that they will never truly understand no matter how many different ways it’s explained? How do you explain to people you are sick when your brain can’t function well enough for you to realize it? and How do I not drive myself crazy while my body recovers from my exposure?
If someone can lay some insight as to what is going on that would be so helpful, or even just talk me through it that would be great too.
Thank you for your time.
Thank you for posting. Your honesty and openness is refreshing. My son is five years old and experiences the same as you, to include hallucinations, insomnia and stereotypies to name a few. His symptoms are all neuro psychological. Have you looked into trying a mild blood pressure med to control the accidental glutening? We were prescribed clonodine. It's not something to take all the time, just if you need to take the anxiety and insomnia levels down. I have only given it to my son during one episode and the first time I gave it to him he said, "finally!" and then fell asleep. He had been suffering from insomnia, anxiety, intrusive and dark thoughts for days. He needed the sleep. (Side note: a lot of meds are made with lactose so you should always ask for dairy free and of course gluten free when filling a prescription).
So my son responds very negatively to the following foods which are considered by some to be cross reactive to gluten.
- Rye
- Barley
- Spelt
- Wheat
- Oats
- Buckwheat
- Sorghum
- Millet
- Amaranth
- Quinoa
- Corn
- Rice
- Potato
- Hemp
- Teff
- Soy
- Milk (Alpha-Casein, Beta-Casein, Casomorphin, Butyrophilin, Whey Protein and whole milk)
- Chocolate
- Yeast
- Open Original Shared Link (instant, latte, espresso, imported)
- Sesame
- Tapioca (a.k.a. cassava or yucca)
- Open Original Shared Link
Our best bet has been to only eat fresh fruits, vegetables, grass fed meat and gluten free nuts. I highly recommend trying an AIP diet.
After a glutening I may give him one or two methylated B12 supplements. Have read studies involving the use of B9 in psychiatric disorders, but haven't tried it.
Let me know if you want to chat or have any questions. I've been dealing with this for about two years now. We can probably learn from each other.
P.s. Just discovered recently that he reacts the same way to coconut as he would to gluten. Eliminated and now we're normal again. If you start feeling like you can't climb out of it then look very closely at your diet. Food logs are easier to make if you're eating very limited whole foods. You can slowly add things back.
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Get pictures if you can and contact GFWD if true and perhaps we can inform others better about this issue.
I've never used GFWD. I assume that is a website called gluten free watchdog? I've heard others mention it. I do have pictures. I will look them up. Thanks
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I reached out to Divina to inquire as to whether their olives contain gluten. The customer service representative replied informing that the blue cheese stuffed olives contain breadcrumbs therefore contain gluten.
1) The Divina brand blue cheese stuffed olive label does not list gluten as an ingredient.
2) All Divina brand olive labels have an allergen disclaimer specifying that the olives were manufactured in a facility that handles nuts. However, it is unclear as to whether the blue cheese stuffed olives are produced alongside all other Divina olive products in which case the allergen statement fails to disclose the fact that these products are produced in a facility that uses gluten.
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Nooooooooooooo on the cortisone shot!!!! Oral steroids or steroid shots will work BUT when the steroids are done there is a backlash of the rash that will make you wish you had never been born!!!! Trust me, been there, done that!
Dapsone has a lot of side effects. Read up on it before you jump in the arena. Many here have tried it and the majority had side effects & had to quit it however some have done well on it.
My dermatologist prescribed Fluocinonide Cream (or ointment) 0.05%. It really helps!
I never knew steroids made it worse. Thank you for posting this. I too have the rash on my knuckles, but it's undiagnosed. The allergist prescribed steroid cream and it only seemed to make it worse so I stopped using the prescription. My intent is to do an eight week gluten challenge after the holidays, but after reading this original post I'm fearful that my rash will spread. Right now it's contained to my knuckles not to mention the other symptoms like throbbing joint pain, dizziness, fog, fatigue. The last time I was glutened I felt like I wanted to vomit, which I had never experienced before. Can symptoms worsen or spread each time you're exposed? Seriously hesitating to do this for eight weeks after reading this thread.
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Hello,
I finally made the trip I've been looking forward to for quite some time. I'd been to 7 different doctors, and none could tell me what is wrong with me or what is causing my symptoms. I thought the Mayo Clinic might finally provide the answer, but once again, no answers.
A brief history:
Two years ago, I ate whatever I wanted (very poor diet consisting of fast food, sodas, and a lot of sugar) and never experience an allergy to anything. I had a hemorrhoid issue that was causing stress to life, but that was my only real health issue. In March of 2012, I had a banding procedure to remove internal hemorrhoids, and suddenly my health changed. Within a week, my hands began to hurt to the point that washing dishes, turning a door knob, or picking up my 18 month old daughter was almost unbearable. I initially thought I had RA, but after seeing four rheumatologists (including one at Mayo), I'm pretty much convinced I don't have RA or Lupus. The hand pain eventually migrated to my wrists, knees, hips, and finally jaw. Over time, I began getting popping in my wrists and shoulders. I know have considerable popping in those two areas as well as my jaw. In September of 2012, I saw a nutritionist who did IGG/IGE bloodwork for food sensitivities. She told me I was intolerant to 30 foods tested: Egg, carrot, coffee, lemon, green peas, rye, tuna, yeast, asparagus, cashew, crab, lobster, peanuts, safflower, walnut, yogurt, barley, cauliflower, gluten, malt, black pepper, sesame, watermelon, cantaloupe, cheese, grape, milk (cows), pineapple, tomato, wheat.
Because I was willing to do anything to feel better, I tried to cut out all foods on the list. I noticed that the change in diet began to make the joint pain better (although it didn't go away). However, this diet has caused me to go from 156 pounds to about 130, give or take a few pounds depending on the day. My metabolism is just too high to maintain weight with this diet. From March of 2012 to February 2013, I went from my GP an orthopedic surgeon, to a nerve specialist, to 3 different rheumatologists. I also saw an allergist who told me I didn't have food allergies. After the third rheumatologist told me to come back and see him when I was in more pain, I gave up and started planning to make the trip to Rochester for the Mayo Clinic. I've never had any SWELLING in my joints even on my worst days, but they do get warm.
So here I am today. I've had numerous blood tests done and just finished a battery of them at the Mayo Clinic. I also had a joint scan done and urine/stool tests. I've previously had a bone scan as well. All results are normal. I've spent thousands on tests, MRI's, X-Rays, bone scans, joint scans, and consultations only to be told I'm a healthy person according to all the doctors. I was also told at Mayo that the IGG/IGE tests done by the nutritionist were a scam and I need to go back to eating more foods. He told me there was no such thing as "leaky gut," that it was a hoax.
The problem is that food is tied to the joint pain and the POPPING! If I eat things high in sugar or off my list, my joint pain gets worse almost immediately. I can tell a difference in the popping within 10 minutes of swallowing some foods.
I'm now having stomach/gut pain (started about 2 months ago). It comes and goes, and the real problems are the joint pain and the popping. I can't go 10 minutes without my shoulders popping, and it's frightening. My wrists begin to feel tight like they're going to lock up, and then they pop when I move them.
While I'm not certain I'm intolerant to the 30 foods listed, I am certain that I am to ones I've tried. And food is tied directly to my joint pain and popping.
I am having my first colonoscopy and endoscopy done this week (mainly to rule out anything crazy like a tumor or something). I haven't eaten gluten for 9 months though, so they won't be able to do a biopsy for Celiac. Mayo did a gene test for Celiac and I do not carry the genes, but they told me that doesn't completely rule it out (confused).
Has anyone had popping in their joints or joint pain without real stomach issues? Even if I don't have Celiac's disease, I know I've become intolerant to many of these foods. I've never had any bleeding even with the hemorrhoid issues.
I'm very frustrated. I feel like I'm on an island with no help in sight. But, I'm still looking for answers. I thought maybe someone on this board could provide some insight or clues to my issues.
I have what I believe is or are hemorrhoids and my chronic joint pain seemed to come about at around the same time. These symptoms all came about immediately after the birth of my daughter. Because my son started experiencing major health concerns our family made a decision to trial a 100% gluten free diet. I'll be damned, my joint pain entirely disappeared. Then I noticed that this chronic that I had for 11 years went away. I no longer felt tired all the time. I no longer experienced boughts of dizziness.
Here's what I recommend. Do an elimination diet and start with Paleo. If you're anything like me you may benefit from adding a non dairy kefir to your daily diet. I feel more like a normal person if I avoid gluten, but I feel like a million bucks when I drink my daily kefir. Look for a brand called Forager Project. It contains ten live active probiotic cultures. I stick to a simple whole food diet. I've eliminated all grains, soy, dairy, nightshades and drastically reduced iodine intake. Best of luck on your journey towards healing!
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Which dairy free kefir product do you take? Something like KeVita? If so, which one.
I highly recommend the brand Forager Project. It's made from cashew milk. It contains 10 different live active cultures. That stuff is like liquid gold. It's currently sold out at our local store right now. Kite Hill almond milk kefir only contains 4 cultures and Harmless Harvest coconut kefir contains 8 cultures. I found all of these at Whole Foods. Our regular grocery store doesn't carry a non dairy kefir unfortunately.
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Is that true? I'm 7 months diagnosed and used to take very few prescriptions.
I think I got cross contamination a few months ago and my gut hasn't been well since. It has caused me lack of sleep, anxiety, and increasingly more severe stomach pain. Now I'm on three prescriptions from cramping, sleep, and anxiety. Bentyl (cramping), trazodone (sleep), Sertraline HCL (generic Zoloft).
Some of my pharmacists seem clueless when I ask about gluten in the prescription. They show me a drug list but I don't know if these ingredients contain gluten.
Maybe my SIBO has returned and is getting worse and I'm thinking I'm being glutened. I'm seeing my GI doc. Friday.
I'm not sure about gluten, but many do contain lactose according to my pharmacist. So if you are sensitive to dairy then that could be an issue. I would look into vitamin deficiencies in regard to your sudden onset of symptoms. I've been told magnesium can help with sleep. Regarding anxiety, I started drinking dairy free kefir and that healed my DH and anxiety all within a matter of a week or so. I'd struggled with those symptoms for 12 years. I also take Garden of Life kids multi strain probiotic daily, but it wasn't until I added the kefir when I started to feel better. Also encourage just simple whole foods to treat SIBO. such as grass and vegetarian fed meats. Basically a paleo or AIP diet.
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As of August 2017 Tylenol has dropped its gluten-free label. Their website has posted a disclaimer stating that while they do not use gluten in their formulation, due to the global supply chain they cannot guarantee that their products are gluten-free. Motrin, Advil and other OTC pain relievers have similar wording on their websites. Very disheartening.
The Celiac community needs to renew its support of a bill in Congress to pressure companies to actually test their products instead of murky labeling that only satisfies the companies' liability attorneys.
I guess we, as a family, won't be using OTC pain relievers anymore. Simply not worth the risk. Thanks for sharing.
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There are 3 major things and all are related to malabsorbtion from celiac damage, Magnesium, B6, and a issue with serotonin and tryptophan. These can be addressed with supplements. For magnesium at night I found Doctors Best powdered magnesium is a great relaxing and makes you just want to sleep at night. B6 you can supplement with food or some companies make a nighttime formula for this like liquid health. The serotonin and tryptophan can be helped by taking a few tsp of pumpkin protein before bed, which also has b vitamins and magnesium in it.
Luckyvitamin.com and amazon have them I went ahead and pulled the info on the sleep well formula from liquid health Open Original Shared LinkCurious. Thinking about trying supplements for my son. How many hours of sleep has this regimen added to your total duration of sleep?
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Here is my reply from Tropicana:
Hello Michelle:
Thank you for contacting us about Tropicana products.
We recognize that it is important to provide consumers with information so that they can make informed choices about the products they purchase. We are currently in the process of evaluating all of our products for the presence of the top eight allergens. At this time, we can not recommend products that list natural flavors or any other additives in the ingredient listing for people who are gluten intolerant.
Tropicana Pure Premium juices are the only juices that do not contain gluten. However, these Pure Premium juices (without any additives) are ones that include the plant numbers 48, 12 or 33. Plant information is located in the expiration code and can found following the month and day.
We hope this information is helpful.
Amy
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Hello. I have Celiac Disease and am unable to tolerate gluten (found in wheat, rye, barley and oats). I noticed that you have "modified food starch" on your ingredients list. Can you tell me the source? Are your drinks gluten-free?
Thanks,
- Michelle
EMAIL*MESSAGE*END
Well, now I know why I've been so down the past few days. There modified food starch *does* contain gluten! I've been drinking it every day
We bought the orange juice last week and I finished it off this morning - right before I got the email
Usually I buy the Minute Maid but bought the Tropicana without thinking I saw "modified food starch" on the label last week but kept drinking it (because I'm an idiot) and assumed it was safe - just thought I'd send them an email to be sure.
I wonder how far this has set me back..?
Poor little villi! I probably flattened them out again - Michelle
Has anyone reached out to Tropicana recently to find out if this is still the case?
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Spicely Organics is my number one source all salt free also, I use The Spice House for some oddities like tomato powder, and chorizo seasoning. And for blends/all purpose types I use Big AXE Spices which are also salt free.
Open Original Shared Link
Open Original Shared LinkThanks! Where can I find these? Are they sold at any super markets that you're aware of?
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For those who are hypersensitive, is there a particular brand of herbs and spices that you can guide me towards. Thank you!
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Does anyone know of a doctor who is familiar with gluten related disorders (dermatitis herpetiformis and/or gluten ataxia) in the Cincinnati area?
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Also, does anyone know whether there is a specific gene associated with dermatitis herpetiformis and/or gluten ataxia or is it the same genes expressed in those who suffer from intestinal issues?
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Thanks guys. I used to get really bad spells of dizziness which has seemed to have gone away since going gluten free. I never would have connected the two issues together. I used to work in a bakery for Kellogg which was when I ended up going to the hospital for what they diagnosed as vertigo. But I'm kind of starting to think that my dizziness could have been from breathing in the flour from the silos. It got to a point where it was difficult for me to stand up. But you mention nutritional neuropathy and I do seem to feel really great when I take vitamin B12. Sounds like I need to find a new doctor who would be willing to run some tests.
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That company is good as far as being gluten free goes however they use a lot of soy protein or flour in their items. When first diagnosed I thought I was being glutened by many gluten free foods that were made in dedicated facilities. It took my doing a food and symptom log to realize the common ingredient that was in all those products was soy protein or flour. Could you have an issue with soy? It isn't uncommon for us to have other intolerances or sensitivities.
I get blisters from soy just as I would from gluten. It took an extremely strict elimination diet for me to figure it out.
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What is peripheral neuropathy? I have had total numbness at the tips of my toes for maybe twelve years now. It's accompanied with other strange symptoms such as symmetrical rash, joint pain, fatigue and brain fog. The doctor told me that I probably stubbed my toes or injured them by wearing uncomfortable shoes. I'm wondering if it could be peripheral neuropathy caused by gluten. It doesn't hurt. I just have no feeling at the very tip of my toes. Now that I know that my other symptoms are tied to gluten I'm wondering whether my toes are really "injured" like the doc says or if it's caused by my gluten intolerance and if so, is there a chance it will go away over time?
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My son is 5 and his symptoms are all behavioral and neurological. If he eats a few pretzels he will develop something called a stereotypy where his fingers become sort of stuck in distorted positions for days. Before we removed gluten from his diet, he experienced auditory and visual hallucinations, insomnia, loss of balance and fine motor, periods of confusion (doesn't know where he is), dialated pupils, chronic post nasal drip, keratosis pilaris covering torso, extreme behavioral issues, constipation and bloating. We've been to 3 neurologists, 2 allergists, an endocrinologist, psychological, psychiatrist, dermatologist, infectious disease specialist and soon will see a gastroenterologist. He's tested negative for celiac and doesn't have the gene which would indicate gluten as an issue for him. Despite these facts, we entirely removed gluten and dairy from his diet and he is a normal happy playful child again, living the life he should be living.
He's had a few instances of dietary mishaps at school which were difficult to recover from. We implemented the AIP diet which for us included no grains (no corn, rice or quinoa), no dairy, no legumes (especially soy), no eggs and limited nightshades. Basically, we have been eating only vegetables, fruits, meats and nuts. Nothing processed. It works. Now we are at the point of adding things back into his diet and it's going well. We've determined that he's sensitive to a particular baking mix brand called Simple Mills. So there are only two possibilities to this a) Simple Mills brand isn't as gluten free as it needs to be or b)my son is actually sensitive to baking soda.
I also think he might be dealing with intestinal permeability or "leaky gut". I've been reading about a protein called zonulin and I question whether that could be a potential biomarker in our case. Prayers for your daughter. If you think it's a dietary trigger then you are right and I encourage you to never give up. You will find an answer if you keep looking. I promise.
Help with Not Feeling Crazy
in Coping with Celiac Disease
Posted
Update: We haven’t looked into FMT yet. Currently the GI and allergy team are looking for an autoimmune condition also aggravated by gluten called EOE which can occur anywhere throughout the digestive tract. Our next steps are a two week unrestricted diet followed by endoscopy and biopsy.