• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
ravenwoodglass

Celiac Cost Me Everything

Rate this topic

Recommended Posts

The long years I spent undiagnosed cost me dearly. I lost all my freinds and family has pretty much turned their back on me. Now I have no one. I lost my only freind yesterday. My little dog was the only one I had. He was the only one I could talk to. The only one who would go for walks at the lake or keep me company in the yard. The only one who was always there for me. I tried to call my kids but they didn't return my call. One ring, go to voice mail. Which I know means they saw who was calling and chose not to answer. Don't know if I will get a call back or not. One of them has even told me they forgive me for being so sick for so long. They 'forgive me' like I did something wrong or chose to be ill for most of their lives. I did the best I could but it was never good enough.

Pooh was all I had. Sometimes I wish I was never diagnosed as the pain would be over by now. I get so jealous of folks who are diagnosed after only been ill for a few months. They still have a life ahead of them. Sometimes I feel like I am just living waiting to die. I have nothing and no one. It hurts so much.

Sorry for the depressing post I just needed to get it out.

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


((((hugs)))) I am so sorry that you are going through this. There isn't really anything that I could say to make it easier, but I just wanted to say that I think you are hear to be an inspiration. Reading your posts on this forum has given me a sense of hope about getting well when it seems bleak so thank you. And again I am so sorry that you are having to deal with this.

  • Upvote 1

Share this post


Link to post
Share on other sites

I'm sorry raven, I know loosing a beloved pet is a hard thing to go through. I also lost a dog several years back. I had to have him put to sleep. I cried so much. I just wanted you to know that you have our support in this difficult time. Alex11620 is right you are an inspiration to so many people on this forum, especially the newly diagnosed. Your kind words and wealth of experience and information help so many. I know they did when I fist came on here almost 3 years ago. I will be thinking of you.

  • Upvote 1

Share this post


Link to post
Share on other sites

((((hugs)))) I am so sorry that you are going through this. There isn't really anything that I could say to make it easier, but I just wanted to say that I think you are hear to be an inspiration. Reading your posts on this forum has given me a sense of hope about getting well when it seems bleak so thank you. And again I am so sorry that you are having to deal with this.

I agree.

Ravenwood - you are always the first to help the newbies try and figure things out. I am grateful to you for all your advice on here. I am really sorry your dog passed away. And I am sorry you are feeling so sad.

  • Upvote 1

Share this post


Link to post
Share on other sites

Oh Raven! I'm so sorry about your dog! We can't walk with you but we are still here for you.

  • Upvote 1

Share this post


Link to post
Share on other sites
Ads by Google:


Ravenwood,

I am so sorry for all your sorrow. You have helped me so much over the years and I want you to know I see how much you help others on this board. Kids are selfish sometimes; maybe they will come around and realize most parents do the best they can. I come from the philosophy (Read Dr. Ross Greene/website:Livesinthebalance.org)) that people do well when they can and do not when they have unsolved problems (or a missing or lagging skill).

There is nothing I could say to ease your pain but, without really knowing you, (as no one really "knows" one and other on the computer, eh?), you seem such a caring person, deserving of love and happiness.

As for losing a "pet", especially having to be involved in their passing, I have an enormous pet family and always have; consequently, I've also buried far too many. This year we had to put down my absolute favorite coon cat of all time, Sam, more like a spirit guide than cat, really, and I don't know if I'll ever get over it.

Love to you and healing energy and hope for peace,

lisa

  • Upvote 1

Share this post


Link to post
Share on other sites

Raven..I've onl;y been here for a short time, but want you to know I'm so thankful you're here. You're always so compasionate and helpful to others.

I lost a dear basset hound 2 months ago. I know what it's like to have that unconditional love and what it's like to lose it. My family is very much like yours. Very wrapped up in their own life and too busy to answer calls. It's hurtful, but that's a flaw in them, not you!

I know it's not the same, but wa're here for you.

(((hugs)))

  • Upvote 1

Share this post


Link to post
Share on other sites

I'm so sorry to hear about your dog! It's so hard to lose a close companion and my heart breaks for you!

I am also sorry to hear your relationship with your children was strained due to illness. Sadly it seems a lot of young people seem to blame their parents for every little thing these days. I'm 33 and it seems like my friends are just now at the age where they are starting to realize their parents did their best! Some people never realize and will continue a cycle to blame everyone else for their problems. You couldn't help being sick and they should be able to realize that! Resenting you for something beyond your control isn't fair!

You have tons of people here who care for you and love to talk to you! You've helped me and everyone on this board too many times to count! Hang in there! We're all here if you need to talk!

  • Upvote 1

Share this post


Link to post
Share on other sites

I am so sorry. Losing a pet is no less sad than losing a family member, imo. They ARE our family.

Count me too in the group who has appreciated your posts/advice/kind words.

  • Upvote 1

Share this post


Link to post
Share on other sites

I am so sorry for your loss. Such a blow. Don't feel alone. All of us in this forum send you our very best.

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


We are your family too, and we are here for you, through thick and thin, through pain and loss, through feelings of abandonment and loneliness, we are here for you. While there is little we can do to console you in your loss, you can know that we are sending our love and healing thoughts and prayers, wrapping you in our cyber arms, hugging you, thanking you for being there and being you. Know that you are loved and cared for, admired and respected, and you can always turn to us, as you have done, for help and support. You will sorely miss your wee companion and I am so sorry for your loss, as these companions are so special in our lives and loves. Remember him with love and affection, for the difference he made in your life, and know that you have made a difference in the lives of so many others.

  • Upvote 1

Share this post


Link to post
Share on other sites

I feel so bad for you....losing a pet is SO hard. And having family and friends who are not supportive must be awful. They "forgive" you for being sick??? That is beyond unfair.

((((HUGS!))))

  • Upvote 1

Share this post


Link to post
Share on other sites

Raven, I am so sorry for the loss of your beloved dog. And I am sorry that your family is so unforgiving. {{{hugs}}}

Just this side of heaven is a place called Rainbow Bridge.

When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge. There are meadows and hills for all of our special friends so they can run and play together. There is plenty of food, water and sunshine, and our friends are warm and comfortable.

All the animals who had been ill and old are restored to health and vigor. Those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by. The animals are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind.

They all run and play together, but the day comes when one suddenly stops and looks into the distance. His bright eyes are intent. His eager body quivers. Suddenly he begins to run from the group, flying over the green grass, his legs carrying him faster and faster.

You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again. The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart.

Then you cross Rainbow Bridge together....

Author unknown...

  • Upvote 1

Share this post


Link to post
Share on other sites

Thank you everyone. He was so special, at least to me. My house seems very quiet now. I know I won't get over this quickly but I will get over it. There is no one to eat that last bite now or laying on the back of the couch waiting to do a happy dance when I come home. He got me through the last 4 years of undiagnosed physical hell and was just as happy to play catch on the bed as to play it outside. I have my kitties but somehow it just isn't the same.

Thank you all for your thoughts and prayers. You all help me keep going on more days than you know.

  • Upvote 1

Share this post


Link to post
Share on other sites

The long years I spent undiagnosed cost me dearly. I lost all my freinds and family has pretty much turned their back on me. Now I have no one. I lost my only freind yesterday. My little dog was the only one I had. He was the only one I could talk to. The only one who would go for walks at the lake or keep me company in the yard. The only one who was always there for me. I tried to call my kids but they didn't return my call. One ring, go to voice mail. Which I know means they saw who was calling and chose not to answer. Don't know if I will get a call back or not. One of them has even told me they forgive me for being so sick for so long. They 'forgive me' like I did something wrong or chose to be ill for most of their lives. I did the best I could but it was never good enough.

Pooh was all I had. Sometimes I wish I was never diagnosed as the pain would be over by now. I get so jealous of folks who are diagnosed after only been ill for a few months. They still have a life ahead of them. Sometimes I feel like I am just living waiting to die. I have nothing and no one. It hurts so much.

Sorry for the depressing post I just needed to get it out.

I can relate to so much of your pain and I cry for you a bit today. You have been one of the very important people in my life as I have struggled to recover from this. You are an angel here on earth and I only know you through this forum. Pets are family and I understand your loss. Prayers from here to there for you.

Chuck

  • Upvote 1

Share this post


Link to post
Share on other sites

Raven,

You were one of the first in these forums to reach out to me with your strong loving cyber arms and embrace me. For that I will forever be grateful. You have given me and many others in these forums so much love, support,incite and knowledge. For me personally you give me the greatest gift of all HOPE.With out that hope I would have never persevered to get my diagnoses .Most importantly you gave me hope that someday I could recover to the point of functioning (somewhat ) normally.

Those of us that waited ,and suffered for,many years before our diagnose understand the lost of family and friends. Know that we are here for you.

If you are ever in Northwestern Pa. I would love to take you for a very long walk in some of the most beautiful country side you will ever see :)

Our pets become family and we grieve their passing.Your beloved pet will always be in your heart

BIG ((((HUGS))) and much love :wub::wub:

  • Upvote 1

Share this post


Link to post
Share on other sites

I know this isn't going to a popular statement but when you lose a pet, especially a dog, that can be harder than losing anything else.

I have no children, possibly due to Celiac Disease as I was undiagnosed also for most of my life, but when I hear people tell me how their children

treat them later in life, after what you put into raising them, it makes me glad I never had any. I had a dog who died 3 years ago and she was my canine sole mate. She loved me unconditionally, which doesn't often happen with people, and I still miss her to this day. So I feel your pain in a big way.

It can be utterly heartbreaking. It does ease after awhile but I will miss my buddy for the rest of my life. I have yet to replace her as there will never be a total replacement for what she meant to me.

Raven, do you work? I know having a job and keeping my mind focused on that helped a lot and there are people you work with who become your family, of sorts. Yes, finding a job these days is difficult but it does help, even if it's a part time job.

Other than that little piece of advice, I am deeply sorry for your loss. God, I love dogs! They can be a lifesaver but it sure hurts like hell when you have to give them back. :(

  • Upvote 1

Share this post


Link to post
Share on other sites

I feel your pain. My advice would be to replace your beloved pet with a new furry friend, and soon. I have two beagles and also do dogsitting. The dogs get me through each day as I am suffering with a horrible case of DH. Dogs give you the unconditional love and support like no other. I pray you gain strength from the words of support through this forum.

  • Upvote 1

Share this post


Link to post
Share on other sites

Raven,

I have been learning/lurking for the past three years, and when I see your posts, I know I can rely on what you have written. You will probably never know just how many people you have helped! Please know that I care, I have an 18 year old mutt dog that saved my life when my son was killed. I do have a supporting family, but it was that little dog that really listened and was there for me, or maybe I allowed her to see how much I was hurting. She does understand. I am so sorry for your loss. You are family!

  • Upvote 1

Share this post


Link to post
Share on other sites

Raven, I am so very sorry. I too, think that as soon as you have had a chance to grieve for awhile, you should get yourself another dog. I know no one can replace what you've lost, but a new dog won't be any better or worse, just different.

I had a cat once who was different than any other cat I had ever had. I loved that cat so much. But when some creep intentionally ran her over, it was less than a week before I got a new kitten. She's just a "regular" cat, but she's still my buddy, and I've had her for 12 years now.

Family always gives us a hard time. Kids even more than the rest of them. Eventually, they will probably begin to understand how cruel they have been to you - especially of one or more of them develop Celiac!

But in the meantime, cry when you have to, but try as hard as you can to fill up the hours with positive thoughts. You have friends here who will keep you in our thoughts and prayers, and if you need to vent some more, we will be here for you.

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


Raven, my heart goes out to you. I can't say more than has already been said, but you've always been there for everybody in their time of need. I know it's not the same, but we're "family" . . . doing what families should do when one of their own is hurting.

Losing my cat was harder than losing my parents. I sobbed for days when my orange tabby left for Rainbow Bridge. Some animal companions are what I call soul mates. There's something special about them and I think each of us have at least one in our lifetime. Your baby was your soul mate and he left a big doggie shaped hole in your heart.

I have a dear husband and when he's gone, I'll only have my cat family. And yes, they ARE my family. I was never able to have children like so many here but I have two stepdaughters who wouldn't notice if I was dying in the middle of the road. My cats are always there for me.

And FWIW, kitties make wonderful little listeners. They will happily listen to you and comfort you as you grieve.

  • Upvote 1

Share this post


Link to post
Share on other sites

Oh, Raven. I am SO sorry about your precious dog. We had to euthanize our beloved border collie a year ago and she was like the little girl we never had. Seriously. We loved her that much so I understand how devastating this must be. It must bo incredibly hard keeping on with less motivation and with an unsupportive family to boot.

I am one of those few lucky people who wasn't even sick when diagnosed. However, this chronic pain is a killer. It is unrelenting and so severe most days it hurts just to wear clothes. So I sort of can understand what you are going through on the health front. Pain/sickness/poor health so drastically changes our lives and affects all those around us.

You have been an inspiration to me, too. You are very wise and helpful. I need to make a point of telling people that more often. I appreciate you very much and wish I could be there to hug you and cry with you. Take as much time as you need to grieve. It is soooooo very cliche but really try to take one day at a time, or even an hour at a time. Please know I will be praying for you. :)

  • Upvote 1

Share this post


Link to post
Share on other sites

Oh, I am so sorry.

relatives - meh. need a pffffffffft icon.

I have outlived so many. Pets, I mean.

Let me give you the upside. If you subsequently adopt dogs from the pound, and they have a wheat allergy, (has happened to us 2x now) you will not only be the first one able to figure it out and get their hair to grown back in or their joints to stop overflexing, but you will know that it was "meant to be."

So far my "too old nobody wanted him bald dog" has alerted me to a shady character who was casing out our house, and decided to make up a story when greeted with me holding the collar of the biggest thing with teeth he'd probably ever seen, and incredibly, like something out of a stupid Lassie novel, went on a crazy barking spree this spring, until I looked out the window and saw the huge plume of smoke from a residence on fire down the road - drove down there and called in the fire department and gave them the correct address because they had gotten an earlier call with the wrong one. and got somebody to open the driveway gate and made sure they were out and accounted for. Fire department: how did you notice this, what time? me: dog going nuts and running up and down our backyard fence, staring in that direction, must have heard something. (perhaps he was anticipating the CDF planes/water bucket helicopters to show up, they like barking at that stuff too, who knows).

I got this wonderful dog from the city pound putting a plea on Craigs List pets for the "last chance time is up" type dogs, after having to take several months to mourn the loss of the sweetest puppy at about a year old, when he followed my rat hunting terrier where he shouldn't have, and we had to put him down because the injuries were so bad. I don't think you actually ever get over it, so much as stumble around for a while and then moving on. My newer dog obviously had had somebody a long time, because his manners were so good - he was found wandering around pretty starved and with his fur/skin in a really bad way, and the pound couldn't find the owners, but they did their best to bring him back up to adoptable- I wonder what happened to his original humans, (foreclosure? sudden job loss? moved away and gave him to somebody who couldn't cope?) and hope that they are okay.

We are all like this, if capable of feeling. Wouldn't want to be on the other, callous side. My relatives speak of me as some sort of exotic creature they just don't "get" - 'oh, she's an "animal" person.' They're more concerned with their white carpets and crabgrass annihilation.

  • Upvote 1

Share this post


Link to post
Share on other sites

Many hugs

I was diagnosed with depression and anxiety yet on a gluten free diet my symptoms are disappearing one by one. However, over the years, due to my not being well my family turned against me also and I too have no one.

I feel your pain.

I hope things improve for you x

  • Upvote 1

Share this post


Link to post
Share on other sites

{{{{{{hugs}}}}}}

Having been a spousal caregiver and thereby lost friends and contact with family, i understand at least a little bit.

I am so sorry to hear of the loss of your precious and beautiful doggie. Pets often have such sweet, soothing spirits.

I to, have been touched, taught, and inspired by your story and the amount of knowledge and support you share here :)

Take care :)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,912
    • Total Posts
      943,463
  • Member Statistics

    • Total Members
      67,066
    • Most Online
      3,093

    Newest Member
    JULEZ
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hello all! I am new on here, and I was wondering if it worth a look for me to get tested for celiac disease. I've been experiencing severe stomach aches accompanied by issues with loose stool, constant fatigue, lots of infections, worsening of skin on my face, frequent nausea, lots of trouble losing weight. I'm asking because I was feeling better at home from vacation after having a very rough semester at school and I'm not very good at keeping track of what I eat typically, but at home it is mostly vegetables and meat, with the occasional rice thrown in. This morning I had my first bagel in months and was extremely nauseous with severe pains and urges to run to the bathroom.  Do y'all think it is worth a try to get tested for celiac disease or some type of gluten intolerance? I'm so tired of being sick and not knowing why... Thank you <3 
    • LexieA, I agree with Plumbago. The symptom's of low stomach acid and high stomach acid are similar so it is easy to confuse the symptom's of one as the other. Dr. Myatt explains this well in her online article about stomach acid. http://healthbeatnews.com/whats-burning-you/ quoting "But My Symptoms Feel Like Too Much Acid…" Strong stomach acid and pepsin quickly "emulsify" fats and proteins, making them ready for the next step of digestion, passage into the small intestine. When these digestive factors are weak, food remains in the stomach for longer and it begins to ferment. Gas pressure from the fermentation can cause bloating and discomfort and can can also cause the esophageal sphincter to open, allowing stomach contents to "backwash" into the esophagus. Even though weak stomach acid is the central cause of this, even this weak stomach acid, which has no place in the esophagus, will "burn." This burning sensation confuses many people, including doctors, who then "ASSuME" that excess acid is to blame. Too little acid, resulting in slowed digestion, and gas which creates back-pressure into the esophagus is the real cause of almost all "heartburn" and GERD." so  you can see how they can easily be confused for each other. you no doubt are having stomach acid issues but it is because it is too little or too much? Timeline helps us determine which it is. If it happens when we eat something it is already to low to  digest the food we are eating. if eating something cause the heartburn/gerd to improve (especially meat) then your stomach acid is really too high especially if this happens between meals. because eating something will naturally dilute/lower the stomach acid pH. I wrote about my stomach acid being misdiagnosed on my celiac.com posterboy blog. ( have summarized most of what you need to know in this reply but the post is still there if you want to study it more for yourself. if your not taking an antacid now then taking BetaineHCL should improve digestion. If it does then raising your stomach acid by lowering you pH should improve your digestion. study on the best way to take powdered stomach acid before trying this. but I found taking 3 to 4 capsules in the beginning was easier than taking only 1 or 2 in the beginning .. .  until I could back it down to only needing one per meal or now none per meal to aid digestion. which is what we are shooting for.  The place where our body is now producing our stomach acid naturally at a healthy level. if you feel a "warm sensation" in your stomach you have reached a good level. I hope this is helpful. I only know it helped me. *** this is not medical advice but I hope you have as a good experience with it as I did. Usually peopledon't  have a trouble taking BetaineHCL unless they have an ulcer or already taking PPI's which are actually lowering  their stomach acid contributing to a viscous cycle of being locked into taking PPI's long term. if PPIs are taken for more than 6 months they can be almost impossible to stop/quit because of the acid rebound people experience when trying to stop taking them cold turkey and why they recommend stepping back doses by 1/2 gradually so they don't get overwhelmed by the stomach acid your stomach is  able to produce again naturally itself (hopefully). . . if taking betaineHCL jump started your ability to produce stomach acid again. . . if not taking betaineHCL (Powdered Stomach Acid) can replace what the body is missing much like taking a hormone. chris kresser has a good online article on this subject as well. https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/ he says it well. quoting chris kresser. "If heartburn were caused by too much stomach acid, we’d have a bunch of teenagers popping Rolaids instead of elderly folks. But of course that’s the opposite of what we see." **** this is not medical advice but I hope it is is helpful. posterboy by the grace of God, 2 Timothy 2:7 "Consider what I say; and the Lord give thee understanding in all things".  
    • Lex_ I agree with Ennis_Tx. You need to take some Magnesium.  It works best as a Magnesium Citrate or Magnesium Glycinate. Magnesium Citrate are easiest to find. Take it 2/day for the first couple weeks to see how much more energy you have. Then you can take it with each meal or 2/day and one hour before bedtime if it is not convenient to take it at work. If it is working you (right form of as a Magnesium Citrate or Glycinate) you will will experience vivid dreams. And wake up with enough energy to take on the day. **** this is not medical advice but it really helped my chronic fatigue symptom's. It is good for leg cramps too also known as charley horse's. posterboy,
    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
  • Upcoming Events