Hello. My journey took a bit too. As the others point out patience often times is necessary. You want them to get this right and it may take time. I was misdiagnosed for 20 plus years as IBS by symptoms only. In 2016 when I finally met the Dr.  who was willing to do both scopes (endo and colon) it took 2 months to get in for my preliminary appointment. Then my gluten challenge and scopes occurred 5-6 months later. So there can be waitlists and time to get in. The Dr's have to do rule in, rule out, and in my case they often times the past diagnosis and records maybe misleading as well. For example my IBS , my asthma diagnosis etc which my Celiac/NCGS Dr & team later on had to sort through and check me for. So in closing no IBS was found or Asthma diagnosis was not supported in my diagnosis journey (they don't undiagnose you with these conditions) My team had to take time to sort through all the past pieces as well.

It's frustrating to wait  when you feel awful and want answers. However a symptom only 15 minute appointment/diagnosis is not typical for those of us on the forums. Those previous 15 minute symptom based only appointments often were wrong or only a snap shot of our actual condition. Many of us have a long history or falling through the cracks. As the above posters state we often see ourselves in these postings. It was amazing to me to find a few posters on here who symptoms and experiences matched my own. It can be overwhelming and yet the beginning of making peace with what has ailed you.

I wish you the best on your diagnostic journey path weather you are celiac/NCGS, clarity and wisdom for your diagnostic dr./team, and then healing and wellness ahead.

Sounds beautiful. Thanks for sharing ?

How is your spring? My tulips and daffodils just began to bloom this week and now we are due for snow here in the Midwest tomrrow. How is your gorgeous weather? How do you enjoy your Spring? Gardening, exercise, hiking etc. 

Share if you like.?

I am interesting as I out of desperation went gluten-free 4 years before my diagnosis ( long story) . I had skin manifestations, with many other symptoms ataxia, gi bloat pain etc. I had not joined the forums so I did not realize how strict I would need to be. I now know.

Before diagnosis my symptoms of gi bloat occurred within 45 minutes of eating cc food. Skin issues occured a few hours later.

Now diagnosed and being super strict learning on the forum just how strict I have to be ( my most recent cc) gave me bloat within 2 hours and skin lesions within 8-9 hours. Luckily it was confined to 2 areas. My gi stays off damaged for weeks even if DH patch settles my deficiencies and microflora are off weeks.

  ( I was gluten challenged in 2016. )

As Ravenswoodglass says stay whole foods. I don't eat out. My last cc was from a gluten-free labeled product ( one piece)  it was labeled gluten free but not  labeled certified gluten free.

I make most foods from scratch and do whole foods. That food had a decent reputation so I thought I could try it. My immune system said NO! ?

Sorry to hear all but corn are causing you issues. I have problems with gluten and corn. I hope you get some answers and clarity soon. I have had vitamin D, folate, and B12 issues in past too. In addition to multivitamin i take liquid magneiusm, liquid vitamin d and sublingual b12 if I get cc as I don't seem to adequately absorb them by capsule.

Gluten attacks many areas for me just not intestines. My stomach and esophagus visually were noted as inflamed as well on endoscope after my  gluten challenge.

Good luck

Yikes  Ennis. I have not come across this before. I do want to chime in to wish you clarity, health, and healing soon.

Hi Dale,

Welcome

It is possible based on what you shared you may have had a gluten reaction. 

Did your joint pain return as well as the gi pain?

Is this your regular physician? If he is sending you for colonoscopy it maybe worth telling the gi Dr about your gluten NCGS or celiac concerns.

The colonoscopy will not see small intestine damage that requires a endoscopy. 3 years ago they gave me both scopes, but prior to that I only had a colonoscopy. My colonoscopy was ordered in my early 30s due to another relatives health issue not celiac. I was missed at different intervals with a variety of symptoms in my early 20s, 28, 30, 32, and 38. I only became official in medical records 3 years ago at 42.

  If the gi wants to pursue celiac testing often they will want you on gluten for 12 weeks. Occasionally a gi will do a 2 week gluten challenge with an endoscopy, but the 12 week challenge is the norm.

Unfortunately I was misdiagnosed and missed for quite a long time. My cousin is also a celiac and was missed until her 30s. She was diagnosed before me. We also present symptoms differently.

So if you feel this maybe your issue you need to ( despite your other Dr poo poo ing your concern) let the gi know.

Best wishes 

Good luck 

Not sure if someone has posted this before, but I found it interesting UIC Chicago researchers found celiac permanently reshaped immune cells in the intestines.

https://www.uchicagomedicine.org/forefront/gastrointestinal-articles/2019/february/celiac-disease-permanently-shapes-immune-cells-in-the-intestine

PS: Note: UIC is University of Illinois (Chicago campus) vs University of Illinois (Champaign Urbana campus)

Hi i don't recall that I had a smell per se. I do know that after detoxing after the Gluten challenge. I was sweating out at night rest time as if I was running a high fever from illness. My husband even noticed it was unusual.

Are you still working at the bakery? Did you finish all your celiac testing?

If so then my opinion would be to support your body in detoxing and support your gi tract in replacing microflora-probiotic to hopefully get back your homeostasis and natural scent.  It's possible your body was actively fighting hard with constant exposure at the bakery to detox any inhalation\ possible ingestion.  I am not a Dr but someone with gi issues and  DH who went a long time misdiagnosed. I went alternative routes to cope with whatever I had that didn't seem to be fixed by my former misdiagnosis'.

It sounds like you are on right track getting that vitamin d deficiency and b12 issue addressed. 

For me I use several ways to detox depending on what feels right for you

Drinks tons of water

Dandelion tea

Acupuncture

Epsom salt bath

Exercise

Many of these help me you could find the one that works best for you or a combination of them. 

Best wishes

Hello welcome. All great advice from above posters. 

yep it's acid reflux is familiar to me. I had multiple intolerance s after diagnosis. My esophagus and stomach visually were a mess the gi scope biopsies showed inflammation of immune nature, but not marsh grade villi destruction. As I could only complete 6 consecutive days of my gluten challenge.

For me my immune system attacks -everything !? All my organs felt inflammed. I believe my immune systems attacks my stomach, which affects my acid production, processing of food, and well if the stomach can't  do its job right the rest of the tract also inflamed has additional burdens.

I found Apple cider vinegar and fresh minced ginger  was my friend in the beginning. I still do it now when I need it. I like Dr. Axe's formula.

https://draxe.com/recipe/secret-detox-drink/

I blended My foods for several weeks as I had 13 intolerances, a ton of inflammation, my gallbladder was a trickle of bile, and My pancreas too inflamed to make enzymes properly. My inflamed stomach clearly couldn't product the right amount of HCL and damaged parietal cells likely not able to absorb many nutrients especially b12.

My stomach cells I believe get damaged. I discovered with  more recent c.c.  Experiences reveal when the stomach  gets inflamed I need to supplement b12 sublingually. As my typical supplement is not absorbed right when my stomach is inflamed . The sublingual  b12 helps a bit with the bloat, but my body has to heal to really kick it.  I take liquid vitamin d and liquid magnesium as well. I enjoy a good Epsom salt bath for comfort. As others says tons of water. I drink water keifer too. Dandelion tea is helpful as well. L-glycine may help healing. I also heard (never personally tried) aswaganda  may benefit mood.

I use tcm acupuncture as well to support my body. I have been seeing my chiropractic tcm Dr for years now. Who ironically is also a celiac. 

I am slowly getting down a routine here. I'd love to say I never get cc, but even at my strictest DH current best practices regime it still occasionally slips in. ? For my DH I use topical zinc oxide.

I like the others above use many of the tricks and arsenal of tools that I pull out to support my body. I really hate being cc, and I'll admit it is one of the most challenging things emotionally I am learning to accept as this celiac life is showing me I can't control everything in my environment all the time.

Gluten is everywhere. I wish it were not. I just am vigilant and avoid being reckless. No eating out. whole foods based diet as most gluten-free processed foods were revealed to be an issue for me. What is not Whole foods I make from scratch at home. Only a few certified gluten-free processed foods make the cut.

In closing I swear once enough of the initial gluten was out of my system,  I no joke slept a ton for 2 years, probably more than I have my whole life as My body needed to heal years of damage due to misdiagnosis.

Your sis I'm sure will help you, but as you'll find most of us are different with many similarities. We have to tailor, our healthy daily routine and our healing routine over time for our unique selves. While my cousin is celiac we are not one size fits all, even with shared genetics. I can't have corn, corn dervatives, or cows milk. She avoids lactose milk products,  but has no corn issues.

Hope we have given you some helpful info and tricks of the healing trade. 

? I like to verify I am living gluten-free  current best practices. Thanks.

Hi Nikita,

Welcome. I have had gi issues all my life.

Since removing gluten out of my life, i realized that symptoms that plagued me at 5 are connected to gluten and my immune system. At 5, I get where my symptoms would have confused Dr's as not being celiac.  In my early 20s is when I think someone should have been onto it. I was misdiagnosed as IBS back then by symptoms only no one every checked my gi tract just wrote IBS in my file. I began to see alternative non western medicine Drs to help me with the symptoms. I struggled with not knowing what it was, bu t still trie d to manage it.

While in my 30s is when things got really bad and multiple organ systems began simultaneously being impacted it was a busy time of being a mom and having high risk pregnancies and complicated "outside the norm" deliveries. I really did make the rounds at 33 trying to get someone to figure it out ataxia was truly becoming a problem. I went to general dr, dermatologist, immunologist/allergist, and even had gastroenterologist who did a colonoscopy (only due screening due to a relatives condition not celiac).  The Drs During this time I suspect had written it off as stress in my head not immune and gi issues. The perpetual lightheadedness of ataxia confuses Dr e in my opinion and well bumping into things is just a clumsy patient. My concern about thyroid showed nothing, but I swore it was off likely subclinical.?

 Shortly after moving to a new town my new Dr discovered I was vitamin D deficient and treatment with that helped, but wasn't a cure all. It helped some of the inflammation for sure. This Dr was the closest to figuring it out discovering the D deficiency , but moved to medical education field and left her practice by the time I read an article one day that many IBS patients are misdiagnosed celiacs.

Finally at 38 I was experiencing neuropathy and went off gluten myself ( what we are told NOT to do) but desperate circumstances require desperate measures. I was getting neuropathy and that was super scary. 

Then one day I got badly glutened at my sister's 50 b day celebration event. The waitress knew I was gluten-free , As I called ahead etc all the things we are suppose to do, but I now realize she thought it would be fun to serve me gluten instead. ?

 I was so ill I ended up going to a new allergy/immunologist who referred me to a specialist with a team, someone actually who was willing to look at me as having food issues. While she couldn't undiagnosis those former misdiagnosis of the past. She didn't find current evidence of those last multiple conditions , they did all fit into one new all encompassing diagnosis, the one that brought me here to celiac.com

So yes I feel my symptoms started young and grew worse with age possibly because of the fact I was misdiagnosed.  I do admit then I didn't fit the old fashioned celiac standard, but I do believe if Dr's were more knowledgeable about celiac 25 plus years ago, they should have been testing me in my early  20's. I wish I knew before my children were conceived but.....

In the end we now have a gluten-free house. It is entirely gluten free and while I hate getting cc ( exposed to gluten inadvertantly) and massively try to avoid it. ( I go out for no one's b day ever etc) Any cc confirms the symptoms I have I had a long time ago, and were always this. 

I am a DH rash celiac , my scope showed changes, autoimmune infiltration, and inflammation of gi, espohagus, stomach.  I couldn't do more than a 6 day challenge. Ideally they want 12 weeks. I did have skin issues growing up hives, eczema, puppp rash during pregnancy, keratosis pilaris. Now being a very strict gluten free gal it is very apparent upon exposure i am a DH celiac with gi issues, just not a gold standard "marsh" celiac. I leave the typical gold standard celiac to my paternal cousin, my body likes being different.?

Bummer link went straight to subscription membership and log in. No free article available.

On 4/7/2019 at 12:24 PM, Awol cast iron stomach said:

I use Vitanica women's symmetry as my multi.

Since I need additional support for Mg and D 

I use trace minerals Mega Mag (magnesium) 

Vitamin D -D drops or vitamin shoppe liquid vitamin D3 

I use multiple brands as I need to be gluten, corn, and milk free.

Lastly, I make water keifer at home as my probiotic as many probiotics are grown on corn or can contain milk which both upset my immune system.

Good luck 

Edit: After your post-I checked into Vitanica florasymmetry  there are no milk derivatives so I ordered some. I'll have to see how it goes to help support my water keifer.

Thanks for the info. I found for me beyond this forums suggestion not to eat out and no processed foods that AIP, Paleo, and whole 30 recipes were a good fit.

Good to know the garlic and onion around here is a great wellness component. We use mostly fresh minced garlic and red, white, and yellow onions. Most days. Interesting I missed on the forums about dandelion, ironically I discovered this myself. Of course I avoid gluten at all cost ASAP no processed foods or eating out/ restaurants. It is interesting about the dandelion tea my body asked for it I complied and here you linked an article that explains likely why my body asks for it. ?

"So they want to make sure that extreme gluten avoiders know that there’s a chance of cross-contamination, whereas those products may be less-toxic for other gluten avoiders.

extreme gluten avoiders aka celiac's

yes,extreme anti gluten people ?

thanks to the community here who taught me with my dh , ataxia celiac "extreme gluten avoiding style" that it's best not to eat out. Even places that had separate grills and separate prep areas -got me. I learned that I fit the celiac community strict don't eat out / whole foods based lifestyle was the best for me. I did go through an emotional mourning for eating  out  was  about more than food for me. The environment, social,  people, and skyline  watching on outdoor patios and rooftop bars are mourned sadly. They are not for me. I have and am still learning to reframe these hobbies or activities with others, but I must.

Thanks for educating me and supporting me -all you " extreme gluten avoiders" .??

I use Vitanica women's symmetry as my multi.

Since I need additional support for Mg and D 

I use trace minerals Mega Mag (magnesium) 

Vitamin D -D drops or vitamin shoppe liquid vitamin D3 

I use multiple brands as I need to be gluten, corn, and milk free.

Lastly, I make water keifer at home as my probiotic as many probiotics are grown on corn or can contain milk which both upset my immune system.

Good luck 

As cycling lady said this is something to ask to get biopsied. Do you have any Celiac's in the family? 

I don't see any bumps in the photo but my experience is the burning red elbow begins first then the insanely itchy bumps begin. 

Good luck ?

I find at the store many packages have the disclaimer, but I don't recall if they are gluten-free labeled. I heard from someone once in qc/qa that companies use that disclaimer often for protection. That the statement can be a blanket protection use at your own risk. Confusing for the consumer.

You can call the company and ask for more specifics about the statement and perhaps they can give you more clarity. Is it shared lines, same facility, a general disclaimer policy etc. 

I read on the forum here about Nuts.com. I don't recall which veteran posted it. ? I have ordered from nuts.com for. Their site has a separate gluten-free section and is pretty user friendly. 

Edit my apologies I see you did write. They do have gluten containing products and the disclaimer does leave it to buyer to determine for themselves.

Edit 2: my apologies i just saw that I answered a 2010 thread. Not sure how my feed brought it up 2019, but I failed to see it was old. 

Yep as Ennis said we often had issues. The 2-2.5 years after my gluten challenge I had many intolerances and stuggled to process foods. I didn't have SIBO. 

Are you newly diagnosed then it is likely you may unfortunately have to drop some foods for awhile . I had to do a food diary and drop foods that were an issue. I got many of them back. I still have corn and milk issues. 

It also helps sometimes to vary the diet rotate so you aren't consuming the same foods. I had some thresholds for a bit while I waited for my immune system to calm down and my body to heal. 

I had to wait for my bile and pancreas to fire back on at full force. Things that may sound strange, but many of my organs we're inflamed afterward besides my GI tract. I needed overall healing as well. 

I had to be low fat meat, white potatos caused joint pain and muscle aches so I did sweet potatoes etc instead. I dropped potato and rice and stayed whole foods, AIP, and Paleo for that time period. 

I was able to add things back in time. I do a daily multi, extra vitamin d and magnesium, for my probiotic I make water keifer as my former probiotic were grown on corn and I had issues .

It takes sometime to work it all out. Time and patience my Celiac comrade.

Keep us posted 

Good luck

Sounds like you got your answer. I can get knuckle pain, toe pain numbing, my fingers and knuckles and feet also swell with inflammation with cc. So as other said yep- we get many symptoms including hands/knucles/ fingers. My Dr saw once during testing for me the impression my shoe left on my swelling foot. So did my mom. She is a retired nurse. I believe mom was a bit surprised how fast I swelled and that I felt/knew it.

I hope you feel better soon and glad to hear you are sticking with Thai rice. I find quinoa or cauliflower can often be a good fit alternative to rice if you want to switch it up on occasion. 

Best wishes.

Hi Pauline, 

Are you aware if you have any other intolerances? I had quite a few after my gluten challenge. Corn which to my knowledge before my gluten challenge became a no go after. I do miss the convenience of tortillas like mission, but I know have to make my own at home. 

I've made some from sweet potato, cauliflower, arrowroot, cassava, psyllium husk etc since I avoid for now. 

if you developed a corn intolerance you would be reacting to other gluten-free corn based products. Just something to be aware of. 

good luck

On ‎3‎/‎23‎/‎2019 at 7:30 PM, OrangesAndMelons said:

Hehe — I've had IBS for so long I stopped mentioning it to doctors because I know there's nothing they can do. In fact I'm so used to it, when the GP asked if I had any GI symptoms after this test result came through, I said no, before remembering about the IBS! 

Once that IBS is there they often just write every GI issue off to that. Funny story I was diagnosed as IBS symptoms only in my early 20's he told me to figure out what I can and can't eat . The immunology Dr I saw from 2016-2018 helped fill in the blanks and connect the dots for the various confusion of why some non breaded chicken breast bothered me =, but never any made by my mom or myself (people who use meat tenderizer-gluten) A-Ha thanks Dr. The coffee that was supposedly my tremors were just due to caffeine. Nope Dr said to my husband get her whole pure unflavored coffee beans ground in a new grinder and brand new coffee pot she told my husband to get. Thanks again Dr no ataxia, neuropathy, or involuntary tremors after that cup. I can't remember what others gems she figured out for me. While I very much hated 2016-2018 in my Celiac adventure and healing she taught me I really did have a medical gluten issue (which my husband and I suspected) , but through that Dr. and the forum here I realized just how much exposure I was getting and from where.

I will never quite understand why my diagnosis took so long there were many missed opportunities and quite frankly between IBS and I hypothesize (someone writing in my medical that they thought I had mental issues) I was always dismissed. In my early 20's I went the alternative route to manage what I was scared was autoimmune, but wasn't sure when it would reveal itself. In 2008 I ran to several Dr's primary, immunologist/allergist, dermatology as I was having constant lightheadedness/dizziness that would not go away along with skin eruptions/rashes and joint pain galore. They missed my skin issues in 2004 and told me to stop being a baby about my (Puppp rash) diagnosed by visual only by OB. 

I now have all the pieces, the dots connected with the help of the 2016 immunologist, and of course the repeating cascade of celiac/DH symptoms. 

That insane dizziness /lightheadedness yeah well that's ataxia. all those past diagnosis I'm told stay in my file despite the real culprit being discovered later. Sigh. 

For the multitude of multiple symptoms and issues I have I often still am trying to accept that with the medical fields current practices of the 10-15 minutes appointments they spend with you, why I was diagnosed with the multitude of very, very wrong illness/symptoms when the real culprit took a way to long to be discovered. My 2016 immunologist one time had me in her office 2-3 hours. She came in and out and her staff during that time, but that was probably my longest most through appointment ever except if you count labor and delivery of my kids. 

Being sick, my brain, nervous system, body and all my organs being a  patient.mess from Gluten entering my life and my challenge I know I was less than a patient-patient. So with that I hope with this story I reveal my gratefulness to that immunologist. She took the time no one did. I was too sick and witchy for over 2 years to properly thank you. So whatever you are doing today at this moment Dr. -thanks! Beyond words.

May you find that Dr. who takes the time for you. I was misdiagnosed along time until mine actually looked beyond the earlier diagnosis notes to pull it all together.