Not Healing

[CharlesBronson]

Hello All,

I've been gluten free for one year now, and I'm pretty depressed with the results. Granted, I'm coming to realize that I likely had celiac for most of my life, and by the time I was diagnosed I was incredibly sick, but it's still hard to cope with.

I can't even eat a Fasano Diet, and I'm down to just chicken, eggs, potatoes, bananas and a Green Giant mix of frozen veg. All I can drink is water and black tea. Even with this diet my stomach still feels like it's burning a few days a week. 

Symptoms are pain, nausea and exhaustion. They lighten up at times, but never go away for long.

I've been grain free for three months now, and while my partner says she notices a difference, I do not see much improvement. 

The apartment is gluten free. Nothing in my soap or body wash or toothpaste. 

Don't know what else to do...

Thanks for all the support. 

EDIT FOR CLARITY: 1 year gluten free / 3 months grain free 

 

[NNowak]

I’m sorry you aren’t feeling well. We all heal at different rates, but I can honestly say that 3 months is not a reasonable expectation. It takes a longer period of time to regenerate villi and calm the inflammatory autoimmune response. For some it can be over a year, others well over two years once the gluten-free diet is mastered. Has your GI referred you to a dietitian?  My thought is you may have other food sensitivities while you’re healing and may need the help of a professional to navigate through this process. 
 

I was diagnosed 24 years ago and have  many family members with Celiac and other companion GI issues. We have discovered bone broth to be the best at natural healing of GI issues. The low FODMAP diet is important to know as you learn about foods that can be an irritant. Dairy protein and/or lactose requires enzymes to digest, which will be compromised by a damaged GI. 
 

Your doctor should be able to direct your care with proper communication from you. Don’t be afraid to ask for help to make this a better transition for yourself. 
 

Hope you feel better!

[Redi]

Hello - I'm so sorry to hear about your struggle. I'm also 3 months in and feel like I'm going one step forward two steps back. I react to "gluten free" flour and keep going back to a similar diet as yourself before daring to try a new ingrediet. 

My sincerest apologies if this comes across as condescending, it's certainly not my intention. I thought I'd mention some things I didn't think about myself incase any of it is helpful.

I'm assuming you've probably replaced all your cookware - and I mean everything - , the other thing I didn't think of was using the oven. It's impossible to get all the gluten out of there, and I've vowed to just keep it closed and deal with stove top. If you're preparing anything on your work surface, try working on top of grease proof paper. 

I hope things ease up for you soon. All the best to you. 

 

Edited December 20, 2019 by Redi

[squirmingitch]

Hi 

A bunch of questions for you Charles. 

Did you ever go through your kitchen & get rid of & replace things like toasters, colanders, cutting boards, scratched non stick pots & pans, wooden spoons, clean out drawers & the fridge to get rid of gluten crumbs/residue?

Do you ever eat out - EVER?

Do you know not to kiss a gluten eater unless they have thoroughly brushed their teeth first?

OK, I quickly went through your posts --- I may have missed stuff. You said at some point that you can't eat beef? Have you tried bone broth?

https://minimalistbaker.com/how-to-make-bone-broth/

https://wholefully.com/bone-broth/

Bone broth, minus all the herbs & spices for now. You can use a bit of salt but pass on the pepper & herbs for the time being. It's super easy on the tummy, very nourishing & healing. You can start with chicken, turkey & how about game hen? Do you like duck? Although duck may be a bit rich for you just yet.

Ditch the frozen veggies & just use fresh veggies. Zucchini & yellow squash, broccoli, cauliflower are super easy. Just wash, cut up, toss into a microwave bowl, throw in a pat of butter, cover & nuke for 4 minutes. Easy peasy & you know where all of it came from. For now, cook veggies to death -- mush -- so it's all easy on your tummy. You can add them to bone broth for a nice veggies soup thing. Throw in some fresh green beans &/or peas, carrots - cook well. How about fruits? Cook pears, apples. Again, easy.... they won't win any gourmet awards but we're trying to get you some variation while keeping things easy on your system. Peel, slice & toss them in a microwave dish, add a pat of butter or sprinkle a tiny bit of water, cover & nuke. Do you have access to organic fruits & veggies? If so, I would certainly go for those over the regular for now. Sweet potatoes? Wash, while still wet, poke with tip of knife a couple times, roll up tight in tin foil, place on pan & throw in the oven on 425 F degrees for an hour. Careful unwrapping!!!! Don't get burned! The skin will just slip right off & the potato meat will be nice & soft for you. Lots of nutrition in sweet potatoes. 

Edited December 20, 2019 by squirmingitch
stupid autocorrect

[CharlesBronson]

Thank you so much to everyone for the replies. I'm really grateful

I am one year gluten free and three months grain free (no rice, corn, etc). Luckily, I am FINALLY able to eat beef again. I've never tried bone broth, as the store bought broths always made me VERY sick. Would homemade be different?

I've never tried microwaving veggies, but that sounds like a great idea since I have very little energy.

I have been referred to a nutritionist, and it was pretty useless as she said I could eat anything labeled gluten-free and I'd be fine, which hasn't been the case. When I tell them how sensitive I am to food (so many foods) I can tell she didn't believe me (nor did my GI doctor who said he's never heard of celiac being this bad and it's like getting blood from a stone trying to get testing from him). I'd like to get a stool test for candida but I've not had any luck so far.

I've been tempted to save money to see a naturopath to get more in-depth bloodwork for sensitivities, as they seem to be more sympathetic. 

First off... Can I be glutened by an oven?!? I hope not. I cook everything in there... I cleaned it once, but it's far from dirt/strain free. I'd like to learn more on if ovens can gluten us. 

I've replaced everything in the kitchen, from toaster, new pots and pans that are gluten-free use only, to silverware (and new silverware liners), to strainer, to cutting boards and I even have my own dishes. No wooden utensils. My partner eats gluten out of the house only, and she does brush her teeth before we kiss.

I never eat out. Ever. I eat low FODMAP and I try to avoid high glutamate food, as I'm guessing my nerves are damaged from eating gluten all these years as a Celiac (and I get restless leg and electricity all over my body easily from food).

I so wish I could eat those veggies but I find a lot of veggies cause me extreme restless leg, overstimulation and nausea (especially green ones like broccoli and spinach). The reason I am using frozen veg (carrots, green and yellow beans) is because they are easy to cook, but I can easily replace them. The problem is I don't seem to tolerate fruit (at all) or most veggies. I feel like my stomach is so leaky that whatever I eat just goes right to my bloodstream and makes me ill (forgive me if I have the science/process wrong here). I love sweet potato but (like a lot of other veg) find it doesn't agree with me.

Am I allowed to eat butter? I thought I was supposed to avoid dairy, so I've just been using olive oil. 

If I could just manage to eat more fruits and veg without getting sick this journey would be much easier as it would give me so many more options. 

Thank you everyone. I REALLY appreciate the help  

 

[cyclinglady]

Hey, Charles!  

It sounds like you are really doing a good job of being gluten free.  Everyone has given you excellent advice, but I am going to offer something different to consider.......maybe gluten is not the cause of your current woes.  

You mentioned your stomach (pain, nausea, burning).  I had that after a gluten exposure (unknown source) two years ago.  I had my few months of classic celiac symptoms and then developed autoimmune hives.  But I had lingering gastric issues.  I trialed the Fasano diet, but it did not work.  I finally listened to my GI and had a repeat endoscopy.  It revealed healthy villi.  However, he biopsied my stomach too and diagnosed me as having autoimmune gastritis.  Yep, my immune system was attacking my stomach.  I did not have this condition when my stomach and small intestine were first biopsied and I was diagnosed with celiac disease. (No H. Pylori either).  

You might want to see your GI and have him take a look.  I had been driving myself crazy for a year trying to find sources of what I thought were gluten exposures.  (I really did have a gluten exposure a year earlier as my antibodies were off the charts and I had my “it hurts to digest anything” symptom.)  It  just seems that my celiac flare up, triggered a new autoimmune disorder which is commonly linked to a Hashimoto’s which I have had for over 20 years.   I am trying to avoid a 4th autoimmune disorder!

Your beef allergy/intolerance?  Could you have been bitten by a tick?  

https://lymediseaseassociation.org/about-lyme/other-tick-borne-diseases/meat-allergyalpha-gal/

I do not eat frozen veggies.  Seems like most companies are offering sauces with frozen veggies.  I worry about shared manufacturing lines.  Never bothered to call and ask.  

I use my microwave to cook my veggies often.  

Bone broth?  Bones with water.  You can add some veggies if you want.  I use an Instant Pot.  Commercial bone broth or soup stock are processed foods,  things like “natural flavorings” which is another name for MSG.  I do not use them.  I focus on real food.  I just feel better.  

I am a butter “nut”.  I can eat butter as a snack which disgusts my family.    After healing, my lactose intolerance resolved. Butter is fine as long as you do not have a milk allergy or are lactose intolerant. 

 

Edited December 20, 2019 by cyclinglady

[Redi]

I'm also constantly not believed. It's exhausting. Yep - I've just realised I've been glutening myself with my oven. I feel fighting fit after not using it for a few days. 

You could probably get away with replacing the grates and fully wrapping any dishes in foil that go in there. I'm not risking it though personally. 

Big thanks to everyone's replies from me too. It's really nice to hear from people who understand. My home town coeliac Facebook group is full of "if it's labelled gluten free then it is" rhetoric, and that's just, not true or helpful. 

[NNowak]

To add onto my previous response, you seem to be doing everything right. It also sounds like you should go see a different GI so your symptoms can be managed properly. There is no scientific evidence to support replacing cookware, dishes or appliances as the autoimmune response requires 20ppm to illicit a celiac response. For this reason, it seems likely your feelings of malaise are secondary to celiac. 
 

It’s very common to have other food sensitivities while your GI tract heals - you’re just not producing the digestive enzymes required to break down food. The FODMAP diet categorizes foods so you are able to slowly try foods from the least bothersome to foods that you may may eventually eat again (low FODMAP to high FODMAP).  I didn’t realize I was even following this diet until I took my 12 year old daughter to an immunologist for her chronic stomach issues, skin issues and headaches this year. The nutritionist and doctor were very knowledgeable at this office, so the professionals are out there if you keep looking. 
 

in my own journey, I was in my early 20’s when first diagnosed - there was no google to research at that time. All my research was done at the library and through snail mail. Thankfully this organization had just been established and an ingredient list was published yearly in a spiral bound notebook. There were no “Gluten Free” labels at the grocery store, let alone a gluten-free section to buy processed foods. In fact, my diagnosis was “Non-tropical sprue,” and the leading GI told me after a few months I could eat gluten again!!  I was extremely ill and had multiple issues due to malnutrition. It took me almost 2 years to heal the first time and I ate a lot of baked potatoes with lots of butter, homemade gluten-free bread with lots of butter and eggs with aged cheese melted. 
 

I've had four children and three miscarriages, which brought me to a second GI (8 years after the initial diagnosis), he was wonderful. I was with him a few years and through a diagnosis of esophagitis, then he retired. My last pregnancy in 2006 had many complications and I should have stayed with GI care, but finances and four kids wouldn’t allow for it. I’ve struggled with malabsorption issues, a resulting fall breaking 4 vertebrae and a rib that punctured my lung, MS like symptoms, extremely low body, etc. I found myself needed a new primary care and GI to deal with that this past year. It took 6 months, 2 primary docs, a 3rd and 4th GI to diagnose B12/Folate deficiency and I go for repeat scopes (EGD and Colonoscopy) later today. My diet is primarily liquid with bone broth shakes, super greens, fish, chicken, potatoes and a few green veggies. Solid foods don’t sit well in my stomach causing discomfort and occasionally chest pain. SIBO will be ruled out as that is common in Celiacs, especially those newly diagnosed. 
 

I relate some of my Celiac history because it’s important to embrace the research and stay on top of your health with docs that partner in your care. I’m also seeing a functional medicine physician who told me yesterday about low dose naltrexone to “reset” the immune response and act as an anti inflammatory while I heal from this flare. She will also order a stool sample for further insight into biomes, bacteria, malabsorption, and a few other things. She also told me about SIBO before GI #4 mentioned it. 
 

So don’t be discouraged!!  I cannot stress enough the importance of staying up on your research. I felt like Wonder Woman once I began healing from my flare in 1995, and began distance running. My hope for every new Celiac is to experience that energy and feeling of strength once healed. 
 

This is a great forum for information, from non-physicians. Research what you feel is applicable prior to adopting any suggestions or discussing with your doc. Every one of us has our own journey. Good luck!!

[Ennis-TX]

Another limb to grasp at, like cycling lady I ended up with other AI conditions like Ulcerative Colitis, and at one point a candida issues, and my immune system got my nervous system with gluten ataxia which affected my pancreas and stomach...still dealing with issues in that regard even with healed villi.

Those bagged veggies are probably a issue, I do not use green giant or birdseye due to shared lines with gluten. I called a few years back, they use the same packaging lines and just (clean them) as the sauced gluten lines. Not safe for the super sensitive.

But carbs became my enemy for meany reasons, gas bloating, and flaring my UC, I later noticed when I got a glucose meter I was feeling like crap because it was spiking my glucose to dangerous levels. I ended up going Keto and rotating to atkins at time but avoiding all starchy veggies, fruits, sugars etc. I am also Paleo (grain and dairy free) feel much better on the diet of our ancestors with extremely low carb macros.
Funny but you might be borderline keto and dealing with something called the keto flu where you in transition to ketosis, many go low in electrolytes. Might try supplementing in magnesium and maybe some potassium, the Magnesium Glycinate before bed is easiest on the stomach (try doctors best)

I ended up with several food intolerance issues and allergies over the years...some go away, some roll in, some like the allergies are life long.
Keep a food diary, and try rotating your food on a elimination diet. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
 

On the microwave idea, look up Nordicware microwave cookware. I love the grill plate with splatter cover, and the omelette maker. But they also make steamers and other cookware. Cheap, quick, and easy.
 

[squirmingitch]

The oven is safe. I repeat, the oven is safe. Especially if you cleaned it. If it's really nasty then put a lid on anything you cook in there.

Yes, nuking veggies is fun!

If you can tolerate the butter then great. Try it & see Charles. If not, then olive oil is a great substitute. 

[Ennis-TX]

1 hour ago, squirmingitch said:

The oven is safe. I repeat, the oven is safe. Especially if you cleaned it. If it's really nasty then put a lid on anything you cook in there.

With a standard oven true, Just foil line your dish and cover with a foil tent/lid if you want to be sure.
EXCEPTION. if you have a newer convection oven then no, they have a fan in them that circulates the air and can be a issue with CC via flour dust and food particles. I would avoid these and if you do use them ALWAYS cook your food covered tight with a lid.

[cyclinglady]

7 hours ago, Redi said:

I'm also constantly not believed. It's exhausting. Yep - I've just realised I've been glutening myself with my oven. I feel fighting fit after not using it for a few days. 

You could probably get away with replacing the grates and fully wrapping any dishes in foil that go in there. I'm not risking it though personally. 

Big thanks to everyone's replies from me too. It's really nice to hear from people who understand. My home town coeliac Facebook group is full of "if it's labelled gluten free then it is" rhetoric, and that's just, not true or helpful. 

I suppose you could be glutened by an oven.  One that is crusty and disgusting (never cleaned), shared with a home baker, or one that is in constant use (like a pizza oven or one in a bakery).  Then wrapping your gluten-free food in foil or parchment would be helpful.  But who lets their oven get that disgusting?  Wait that would be people like my co-workers who make messes in the microwave and do not clean up after themselves.  I can only imagine their ovens at home.   (Shutter....?). New ovens have a cleaning cycle which can burn off even gluten.    Old ovens?  Use oven clean containing lye and follow all the directions on the can.  

If living in a shared household, I would not personally allow someone to bake with gluten flour.  But I would let them heat up a frozen pizza in my oven.  

Is your household gluten free?  If not, do you have best gluten free practices in place?  Do you allow baking (e.g. wheat flour) in your home?  

If you feel “fitting fight” after just a few days of not using your oven, in my personal experience, it would not be gluten as the source of your symptoms.  Gluten exposures take me down for weeks or months.  

Not all symptoms are due to celiac disease.  Maybe a virus, food poisoning or additional food intolerance other than gluten (if you have celiac disease or NCGI).  

 

[cyclinglady]

13 hours ago, Redi said:

Hello - I'm so sorry to hear about your struggle. I'm also 3 months in and feel like I'm going one step forward two steps back. I react to "gluten free" flour and keep going back to a similar diet as yourself before daring to try a new ingrediet. 

My sincerest apologies if this comes across as condescending, it's certainly not my intention. I thought I'd mention some things I didn't think about myself incase any of it is helpful.

I'm assuming you've probably replaced all your cookware - and I mean everything - , the other thing I didn't think of was using the oven. It's impossible to get all the gluten out of there, and I've vowed to just keep it closed and deal with stove top. If you're preparing anything on your work surface, try working on top of grease proof paper. 

I hope things ease up for you soon. All the best to you. 

 

Hey Reid!  Welcome to the forum.  

Please see my response about ovens.  You might find it helpful.

Since my diagnosis, I have learned that not all symptoms are due to celiac disease.  I learned that healing takes about a year or longer for most Celic.com members when in theory (actually a fact), healing should occur within a few weeks.  But celiacs are treating themselves.  The gluten-free diet has a steep learning curve.  Mistakes are made.  Expect setbacks.  It is frustrating but true!

 Here are my quick tips for a newbie:

1.  Do not eat out until you are feeling  much better and are willing to risk re-activating your celiac disease.  That includes family and friends cooking for you.  

2.  Avoid processed foods for a few weeks or months.  Too many chemicals, etc. to deal with.  

3.  Identify food intolerances.  Keep a journal.  For example, I avoid gluten-free commercially baked bread because Xanthan Gum does not like me (another reason to avoid processed gluten-free foods).  Find your own intolerances.  

4.  Follow up with your doctors.  Get testing to determine vitamin and mineral deficiencies.  Know that not all symptoms are due to celiac disease.  You can develop additional autoimmune disorders or you can catch a cold or the flu.  Consider seeing a celiac-savvy dietician.  

Research and time is your best defense.  Glad you are here.  

 

 

Edited December 20, 2019 by cyclinglady

[Redi]

16 hours ago, cyclinglady said:

I suppose you could be glutened by an oven.  One that is crusty and disgusting (never cleaned), shared with a home baker, or one that is in constant use (like a pizza oven or one in a bakery).  Then wrapping your gluten-free food in foil or parchment would be helpful.  But who lets their oven get that disgusting?  Wait that would be people like my co-workers who make messes in the microwave and do not clean up after themselves.  I can only imagine their ovens at home.   (Shutter....?). New ovens have a cleaning cycle which can burn off even gluten.    Old ovens?  Use oven clean containing lye and follow all the directions on the can.  

If living in a shared household, I would not personally allow someone to bake with gluten flour.  But I would let them heat up a frozen pizza in my oven.  

Is your household gluten free?  If not, do you have best gluten free practices in place?  Do you allow baking (e.g. wheat flour) in your home?  

If you feel “fitting fight” after just a few days of not using your oven, in my personal experience, it would not be gluten as the source of your symptoms.  Gluten exposures take me down for weeks or months.  

Not all symptoms are due to celiac disease.  Maybe a virus, food poisoning or additional food intolerance other than gluten (if you have celiac disease or NCGI).  

 

A rude tone and not being believed again. Time to take my leave of this thread. Funny how strangers think they know your body better than you do ?

[kareng]

4 hours ago, Redi said:

A rude tone and not being believed again. Time to take my leave of this thread. Funny how strangers think they know your body better than you do ?

I don’t see any rudeness from anyone toward you.  I just see people with lots of experience as Celiacs trying to help.  Why scare people or make their lives harder than it needs to be?  Most people cannot just replace the whole kitchen and appliances.  And yet, they heal.  
 

 

[NNowak]

5 hours ago, Redi said:

A rude tone and not being believed again. Time to take my leave of this thread. Funny how strangers think they know your body better than you do ?

I’m a very sensitive celiac with other health issues that flare when my celiac is triggered.  My home consists of my husband (who loves all food), and 4 kids resistant to a gluten-free diet despite 2 being diagnosed (1 is celiac and 1 has NCGS).  We’ve lived in multiple locations over the past 24 years since my diagnosis, including apartments and homes with older appliances.  I’ve never replaced my oven or cookware and my repeat biopsies remain negative.  My celiac child has eaten gluten-free hot lunch prepared in a central kitchen that serves 20,000 students.  For many years I traveled as an auditor and had to eat out, which meant I asked the right questions of my servers and ordered foods that I knew to be safe.  Scientific evidence doesn’t support gluten exposure from appliances (oven, fridge, microwave, dishwasher).  Scientifically unsupported claims (or fanaticism) is what scares people who are newly diagnosed, and exacerbates others who are expected to accommodate someone’s gluten-free diet. 

There were no “tones” expressed, just reassurance and encouragement.  

[GFinDC]

On 12/20/2019 at 12:13 AM, CharlesBronson said:

Thank you so much to everyone for the replies. I'm really grateful

I am one year gluten free and three months grain free (no rice, corn, etc). Luckily, I am FINALLY able to eat beef again. I've never tried bone broth, as the store bought broths always made me VERY sick. Would homemade be different?

I've never tried microwaving veggies, but that sounds like a great idea since I have very little energy.

I have been referred to a nutritionist, and it was pretty useless as she said I could eat anything labeled gluten-free and I'd be fine, which hasn't been the case. When I tell them how sensitive I am to food (so many foods) I can tell she didn't believe me (nor did my GI doctor who said he's never heard of celiac being this bad and it's like getting blood from a stone trying to get testing from him). I'd like to get a stool test for candida but I've not had any luck so far.

I've been tempted to save money to see a naturopath to get more in-depth bloodwork for sensitivities, as they seem to be more sympathetic. 

First off... Can I be glutened by an oven?!? I hope not. I cook everything in there... I cleaned it once, but it's far from dirt/strain free. I'd like to learn more on if ovens can gluten us. 

I've replaced everything in the kitchen, from toaster, new pots and pans that are gluten-free use only, to silverware (and new silverware liners), to strainer, to cutting boards and I even have my own dishes. No wooden utensils. My partner eats gluten out of the house only, and she does brush her teeth before we kiss.

I never eat out. Ever. I eat low FODMAP and I try to avoid high glutamate food, as I'm guessing my nerves are damaged from eating gluten all these years as a Celiac (and I get restless leg and electricity all over my body easily from food).

I so wish I could eat those veggies but I find a lot of veggies cause me extreme restless leg, overstimulation and nausea (especially green ones like broccoli and spinach). The reason I am using frozen veg (carrots, green and yellow beans) is because they are easy to cook, but I can easily replace them. The problem is I don't seem to tolerate fruit (at all) or most veggies. I feel like my stomach is so leaky that whatever I eat just goes right to my bloodstream and makes me ill (forgive me if I have the science/process wrong here). I love sweet potato but (like a lot of other veg) find it doesn't agree with me.

Am I allowed to eat butter? I thought I was supposed to avoid dairy, so I've just been using olive oil. 

If I could just manage to eat more fruits and veg without getting sick this journey would be much easier as it would give me so many more options. 

Thank you everyone. I REALLY appreciate the help  

 

Hi Charles,

I am sorry you aren't feeling well.  Your comment about restless leg syndrome and just starting to eat beef again makes me think of B-12 deficiency.  Our nerves need B-12 to function and heal.  And many celiacs are low on them at diagnosis.  So you may need to supplement them for a bit.  Vitamin D and some minerals can also be a problem.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3820055/

https://www.google.com/search?rlz=1C1SQJL_enUS873US873&sxsrf=ACYBGNRpSoYfo0jbkb48NFKk6bvmSckZOQ%3A1576940042290&ei=CjL-Xd6xEcPXtAbdq6uQAQ&q=common+nutrient+deficiencies+in+celiacs&oq=common+nutrient+deficiencies+in+celiacs&gs_l=psy-ab.3...1482.6171..7938...1.3..0.277.1706.0j10j2......0....1..gws-wiz.......0i71.r-608Z1CVfk&ved=0ahUKEwje3rW4_8bmAhXDK80KHd3VChIQ4dUDCAs&uact=5

 

 

[knitty kitty]

Hello. Sorry you're feeling discouraged and unwell.  Things will get better.  

I was very sick with similar symptoms.  My doctors were clueless. I researched a lot.  I discovered information about Histamine Intolerance.  As a result, I began the AutoImmune (Paleo) Protocol diet (AIP diet).  I only included AIP foods that were also on a Low Histamine Diet food list.  It was very restrictive, yes, but I began feeling better quickly.  As my health improved, I was able to expand My list of tolerated foods.  

Histamine is produced in the body as part of the immune response.  DAO and other enzymes are made in the body to break down the histamine.  Histamine is also found in foods.  Some times the body is not able to make enough DAO to counteract the histamine released by the body AND ingested as foods. DAO is made in the intestinal tract (and in placentas!!!!!) and if your intestines are damaged you might not be making enough DAO.  {Neurotransmitters (dopamine, serotonin, etc) are also made in the digestive tract, and shortages of these can cause depression.} (High levels of histamine have been found in the brains of people with anxiety disorders, trichotillomania, OCD, panic attacks and PTSD.)  

Your body needs certain vitamins and minerals to make DAO which due to malabsorption may not be in abundant supply.  B12, thiamine, B6, and Vitamin C and iron, copper, manganese may be deficient. As Celiacs, we have a higher metabolic need for vitamins and minerals.  I need extra thiamine to help digest fats and carbs.  I need extra B12 because I have gastritis.  Supplementation while your intestines are so damaged may be necessary.  Talk to your doctor first.  

Vitamin D is instrumental in turning off the mast cells that release histamine. (Vitamin D deficiency also results in easily broken, brittle bones, osteoporosis.) Correcting a deficiency in vitamin D can help your system to calm down.  My own vitamin D level showed I was severely deficient.  Bringing my vitamin D level up brought significant improvement.  Vitamin D is a fat soluble vitamin which is often low in newly diagnosed Celiacs.  

Histamine can also be produced by bacteria in the gut.  SIBO may be part of the histamine intolerance problem.  The AIP diet starves off these bad bacteria.  The Autoimmune Protocol diet got rid of my SIBO.

I also removed nightshades from my diet.  Nightshades are potatoes, tomatoes, eggplant and peppers (includes spices from peppers, chili powder, paprika).  They contain chemicals that lead to leaky gut syndrome.  Read this article, please...

https://www.ncbi.nlm.nih.gov/pubmed/12479649

Here's some articles about Histamine Intolerance.  These sites are selling books, so apologies there, but they're written by doctors with these problems. 

https://www.amymyersmd.com/2017/10/histamine-intolerance/

https://theceliacmd.com/articles/histamine-intolerance-causing-symptoms/

And

https://mthfrsupport.com.au/2016/09/dao-deficiency-and-histamine-the-unlikely-connection/

 

Oh, do not consume Bone Broth at first, even though it is very healing, it has HIGH histamine levels.  I got sick from bone broth, too.  Wait until your intestines heal a bit. And Bananas are high histamine, too.  

And do ask your doctor about B12 shots because you have gastritis which impairs your ability to absorb B12.  Get checked for vitamin and mineral deficiencies. 

Hope this helps! 

 

 

[CharlesBronson]

Wow! So many great responses and great information. Thank you all so much!

My oven is fine. Thanks everyone for weighing in on this topic. I've been feeling better the last 2 days, and I've cooked all my chicken in the oven. There's no gluten allowed in the house (especially flours), so there hasn't been any gluten in the oven since cleaning it. 

I've ditched the frozen veg for good. Thank you all for pointing that out for me. My nutritionist said they were fine, but not for me if they're made on the same line as gluten-containing sauces, etc. 

I've also only had potatoes once in the last two days too - this could be helping. I switched back to sweet potato and I'm tolerating it well over the past two days, so I'm going to stick with it for now.

As a lot of people mentioned, I'll need to go back to my GI doctor and get more testing. Unfortunately, I'm in a small city and I'm lucky I was even able to see a GI doc to begin with, because they are so booked/backed up. I'm seeing a resident too... I know that's not good, but it'll all I can get. I really doubt I could switch to another doctor seeing as I was assigned a resident as there were no docs left. The wait times where I live in Canada are absolutely soul crushing. The resident doesn't believe I have any more auto-immune conditions, so he won't test for them. This is why I'm considering going to a naturopath for a really thorough bloodwork. I find specialists (like GI doctors) are very dismissive of any suggestions I bring to the table. 

I could get my GP to order up some bloodwork too... My D was VERY low, but I've brought it back up. They tell me B12 is fine, as is everything else, but I'm a big man (6'6'') with celiac so I may need more than the average person? I can ask my GI doc for another scope of my stomach though. That's the least they can do. 

Cyclinglady - Nope. No ticks. I'm able to eat beef again too. 

NNowak - Thank you for relating your story. I can see how important research will be in my future. Are there any good groups to join for the latest research?

I will read all the research on this message thread too. 

Thanks again everyone! 

[NNowak]

Regarding research, I typically enter a topic in my search engine to see if anything new pops up. Reputable research comes from NIH, Johns Hopkins, Harvard, University of Chicago (Dr Guandolini), University of Maryland (Dr Fadsno), and various other organizations. You are intelligent and will be able to discern relevant material. The holistic healing methods usually come first by blogs, like this, and then you research to see if it makes sense to you. 
 

Vitamin deficiencies are a real problem and can make a difference in how you feel and function. If you do take vitamins find a methylated form as it’s readily absorbed. 

Good luck, and I hope you’re feeling better soon. 

[Wheatwacked]

Here is a list I compiled for myself. I hope it can help you. 

Vitamin	RDA Upper Limit	RDA Male/Female	Celiac
			High Risk
A (Preformed)	3000 mcg RAE	900/700 mcg RAE	no
A (betacarotenes)		do not supplement	avoid
B1 (Thiamin)	none	1.2/1.1 mg	yes
B2 (Riboflavin)	none	1.3/1.1 mg	yes
B3 (Niacin)	35 mg	16/14 mg	yes
B5 (Pantothenic Acid)	none	5/5 mg AI
B6	100 mg	1.7/1.5 mg	yes
B7 (Biotin)	none	30/30 mg AI
B8 (Inositol)		not established
B9 Folate		400/400 mcg	yes
B9 Folic Acid	1000 mcg	400/400 mcg	avoid
B12	not established	2.4/2.4 mcg	yes
C	2000 mg
Calcium			yes
Choline	3500 mg	550/425 mg
CHROMIUM	not established	30/20 mcg AI
CHLORIDE
COPPER			yes
D3	4000 iu	600/600 iu	yes
DHEA
E (food sourced)	no limit	15/15 mg
E (alpha-tocopherol)	1000 mg	15/15 mg
EPA
IODINE	1,100 mcg	150/150 mcg
IRON	45 mg.	8/18 mg	yes
K			yes
LITHIUM (provisional)	40 mg	1/1 mg
Lutein	not set	not set
LYCOPENE
MAGNESIUM	320 mg	420/320 mg	yes
MANGANESE	11 mg	2.3/1.8 mg
MOLYBDENUM
NICKEL
PHOSPHORUS
POTASSIUM	not set	4700 mg
Zinc	40 mg	11/8 mg	yes
SELENIUM	400 mcg.	55/55 mcg
Silicon
TIN
VANADIUM	1.8 mg	ND
Zeaxanthin

[CharlesBronson]

On 12/24/2019 at 10:55 PM, Wheatwacked said:

Here is a list I compiled for myself. I hope it can help you. 

Vitamin	RDA Upper Limit	RDA Male/Female	Celiac
			High Risk
A (Preformed)	3000 mcg RAE	900/700 mcg RAE	no
A (betacarotenes)		do not supplement	avoid
B1 (Thiamin)	none	1.2/1.1 mg	yes
B2 (Riboflavin)	none	1.3/1.1 mg	yes
B3 (Niacin)	35 mg	16/14 mg	yes
B5 (Pantothenic Acid)	none	5/5 mg AI
B6	100 mg	1.7/1.5 mg	yes
B7 (Biotin)	none	30/30 mg AI
B8 (Inositol)		not established
B9 Folate		400/400 mcg	yes
B9 Folic Acid	1000 mcg	400/400 mcg	avoid
B12	not established	2.4/2.4 mcg	yes
C	2000 mg
Calcium			yes
Choline	3500 mg	550/425 mg
CHROMIUM	not established	30/20 mcg AI
CHLORIDE
COPPER			yes
D3	4000 iu	600/600 iu	yes
DHEA
E (food sourced)	no limit	15/15 mg
E (alpha-tocopherol)	1000 mg	15/15 mg
EPA
IODINE	1,100 mcg	150/150 mcg
IRON	45 mg.	8/18 mg	yes
K			yes
LITHIUM (provisional)	40 mg	1/1 mg
Lutein	not set	not set
LYCOPENE
MAGNESIUM	320 mg	420/320 mg	yes
MANGANESE	11 mg	2.3/1.8 mg
MOLYBDENUM
NICKEL
PHOSPHORUS
POTASSIUM	not set	4700 mg
Zinc	40 mg	11/8 mg	yes
SELENIUM	400 mcg.	55/55 mcg
Silicon
TIN
VANADIUM	1.8 mg	ND
Zeaxanthin

Thank you so much for this!