From Hospice to Home: The Power of Gluten

power of gluten

I love your celiac stories. Every damn one of them. Though I might not comment on all of them (the Dude is a busy, busy man), I do read them all and respond when I can.

There are some stories that just grab me though. These are stories that I must share with the community. Not only because they’re so dang amazing, but because there may be other people in a similar situation who read these stories and a light bulb goes off. “Hey…that sounds like my situation!”

Not to be all dramatic and stuff, but by sharing your stories, you may be saving lives. How cool is that??

I received the following story a few days ago via a direct message in Facebook. It’s from a mom whose daughter was placed in hospice by her neurosurgeon, thinking she could not be cured.

Until (thankfully) a GI stepped in.

Read on my friends…

I wanted to share our story with you. My daughter has been sick all of her life: failure to thrive, anemia, seizures, constipation that could clog any toilet (the smell alone could clear a nation), eczema, dandruff, dry itchy skin, ataxia, learning disability.

At age 6, after years of testing she was diagnosed with a brain disease, a leukodystrophy called Alexander disease. It’s a terminal, fatal illness. We were devastated.

She was fighting her illness like a champ, went through spinal fusion surgery to help straighten her scoliosis at age 10.

Then last year she started vomiting everyday (she had vomiting often since we started her on table food at 9 months)…then her airway started collapsing. She was put in hospice by her neurologist because she believed the vomiting, choking, anemia and weight loss was due to the brain disease and nothing could cure or help her. I cried for two days then called the hospital begging for GI to do something, anything to save her.

I took her to a GI again to beg for a feeding tube or new drug to stop the vomiting. We saw a new doctor who IMMEDIATELY recognized CELIAC disease. From my daughter’s dark circles under her eyes, poor tooth enamel, terrible dandruff, tiny thin frame, etc.

She was the poster child for Celiac. We put her on a strict gluten free diet .

THE VOMITING STOPPED. She stopped choking! She GOT BETTER!!

This May she was released from hospice!! Gluten was killing her.

She still has the brain disease, but most of the symptoms were from gluten. She would have died if we wouldn’t have changed her diet.

Today she is 13, weighs a tiny 63 pounds. She has energy, she is out of her wheelchair, never chokes or throws up ….and her poop is Normal!

Keep fighting for us!

I will indeed keep fighting. You and your daughter please do the same. So many healing thoughts being sent your way.

GD

Gluten Dude App: The trusted app for safe, gluten-free dining

LIFETIME ACCESS NOW AVAILABLE AT A PRICE YOU CHOOSE!

subscribe-stars

Find Gluten-free Restaurants

The Naked Truth About Living with Celiac Disease

Subscribe to the Blog

Please enter a valid email address.
Something went wrong. Please check your entries and try again.

Let's Connect

Topics of Conversation

Categories

57 thoughts on “From Hospice to Home: The Power of Gluten”

  1. What a story! I am so sad that it took so long for this child to be diagnosed but thrilled that once she finally was that she has made such recovery. A big way to go to her family who didn’t give up!!!!!

    Prayers being sent their way.

  2. Sue in Alberta

    I have no words to even touch what it would be like to see your child in hospice, dying BUT to see her now – well, that’s got to be amazing!
    Good on YOU for fighting for your daughter. There is still much healing to be done and I hope for nothing but thriving health to continue.
    It’s this very kind of story that brings it home every time, Dude.
    Talk about perspective. Thanks for sharing.

  3. This is what happens when specialists get too focused on one rare possibility instead of doing a FULL work up. Frankly why isn’t celiac disease part of full blood panels?
    Wouldn’t be suprised if brain symptoms started to improve as well. GD I supposed beating a brain doc with a copy of wheat belly would be wrong on too many levels huh?

  4. I’m so blessed that I switched pediatricians and got a diagnosis for my son at 18 months! Anyone that says gluten free is a fad is uneducated. My little one could not walk until after 15 months, had projectile vomiting and diarrhea from birth, chronic ear infections, severly underweight and had severe “lazy eyes”. All these symptoms related to gluten. It took him until almost 3 years old to learn to jump. It’s miraculous to see the improvements after a correct diagnosis and gluten free diet!

  5. Normal Poop! That says it all. I remember being so happy about my own 7 year old finally having normal poops for the first time in her life. What an amazing story!

  6. GD-

    Just freaking amazing. There are no words. Like this doctor you are saving many lives. Keep doing what you are doing and someday every doctor will know the signs before death knocks on another door.
    XO-
    Jersey Girl
    ———————————————-
    “Well some say life
    Will beat you down,
    And break your heart,
    Steal your crown.
    So it started out
    For God-knows-where.
    I guess I’ll know
    When I get there.”

    Tom Petty
    Learning to Fly

  7. No. Words.
    Except that all the nay-sayers should spend an hour with this family to see just who they are hurting.

  8. This is really a problem with everyone being so specialized in the medical field. Doctors only see things from their own field, they don’t have the imagination to think outside their own field of expertise. And a total lack of awareness of celiac by most doctors. Why don’t all of them learn about it in med school??

  9. That just gave me chills! How awful what this family went through, but how wonderful they finally found a competent medical provider.

  10. I cannot imagine the pain and torture of watching your child get sicker and sicker. Thank goodness for that GI and the mom who kept hounding them on her daughter’s behalf. I guess the moral of this story is to never give up and to always get a second (or third…) opinion. No one is going to fight for your family like you, yourself, would. Don’t worry about being a bother, or being labeled difficult. Those are the parents/people who get results/answers through their kind persistence and determination. Bravo! I wish her a speedy road of recovery!

  11. I am the mother of this child . Thank you for your kind words ! It still gives me anxiety when I go back to the day the neurologist told us that nothing could be done , it was time for hospice . That punched in the gut feeling comes back every time I tell her story …it gives me chills just thinking , what if I wouldn’t have begged GI to see her ? She would be dead . From gluten . How tragic it is that many , many kids are probably dying from undiagnosed celiac disease. Breaks my heart . I tell everyone I meet Hailey’s story , hoping it will save a life . She had been tested for celiac a few times while hospitalized , but never gluten challenged so it always came back negative . ( You have to be eating gluten to show a response ) Her last scopes showed her intestines have healed !

    1. Keep telling it mama, because it very well might save a life. My daughter was diagnosed at 14, probably only because I was first. She didn’t have “classic” celiac symptoms. I am so happy for your daughter and your family! I hope she continues to improve daily!

    2. I am so glad your daughter is doing better. I have 2 grandsons with Celiac one of which is also Down Syndrome. He had a lot of the same issues and no one could figure it out, finally when he was 8 years old his doctor sent us to Mayo Clinic in Rochester, MN where he was diagnosed with Celiac. He is now 20 years old and his brother 18 and both are doing very well now that they are gluten free. I hope your daughter continues to improve, it is a heart breaking story to say the least. Bless your family!

  12. I wouldn’t be surprised if the “brain disease” is really due to gluten. Please be aware that many people with neurological symptoms from gluten are also sensitive to dairy. As difficult as it is to go off of dairy, she may need to try that to see if it clears up all of her symptoms.

    1. Genetic diseases like Alexander Disease are diagnosed through DNA testing, among other things, and, though rare, are very real. One very definitely can have both celiac and a leukodystrophy. I’m currently in the process of having my still-undiagnosed demyelinating condition evaluated by geneticists at a big teaching hospital. It is thought I might have an adult-onset form of some type of leukodystrophy. I also have celiac disease and have been gluten-free for 13 years.

      And this brings me to another problem… My celiac disease was diagnosed years ago. The diagnosing doctor closed the practice and moved away. I have had TWO neurologists now not believe that I have celiac disease. One ran a celiac panel, without telling me. It, of course, came back negative (I’d been gluten free for 12 years!). But she insisted it didn’t matter whether I was eating gluten or not. The test was negative. So I was deluded.

      Most recently, a neurogeneticist at the big teaching hospital hounded me on the celiac diagnosis and smugly declared I couldn’t really know if I had it or not, since the doctor who diagnosed me wasn’t a gastroenterologist. I later discovered that he’d actually changed my official electronic medical record at the teaching hospital. It now says “gluten sensitivity” where it used to say “celiac disease.” I am very angry about this, but have discovered that I, as a mere patient, can’t change it back. He also suggested we run a celiac panel to see if I actually do have celiac. I said there was no way I’d make myself violently sick eating gluten just to prove my diagnosis to him. He said he was “pretty sure” I wouldn’t have to be eating gluten for the test to be accurate… SIGH. I just don’t even know how to respond to these idiots. Unfortunately, I do have some kind of neurodegenerative condition apart from my celiac disease and need some kind of medical help for that. Very frustrating.

      Sorry to digress from this very important post… mostly, I think it needs to be stressed that celiac can, and does, sometimes co-exist with other awful things. Going gluten free can have a major impact on health and quality of life, but for some of us, it’s not the entire answer. And it’s despicable how little medical specialists understand about it. They roll their eyes as much as the rest of the wider world.

  13. If I had not been close to slipping away myself, I would find it hard to believe that undiagnosed celiac can do this much damage–but of course, those of us who lived it truly do understand! Many celiacs I know came *this close* to dying because of course, no doctor thinks “celiac” when you are past childhood.

    …..but this story is baffling. A child with failure to thrive, ataxia and anemia should have set off alarms in the pediatrician!

    Good thing you asked for the GI consult, Dawn. Can’t tell you how many of us have had to save our own lives—and you saved your daughter’s.

    Please get a second or third opinion on the Alexander disease diagnosis. That is extremely rare. How do they know her symptoms are not all caused by celiac and malabsorption?

    I send you giant hugs and you have my admiration for persevering.

    Tell your daughter that in my eyes, she is a true warrior princess. xxoo

    1. Hey Irish,

      Regarding “setting of alarms…”

      I walked into one of my gluten free bakeries on Saturday and some how managed to strike up a conversation with one of the people in line… Turns out he is an INTERNIST and I KID YOU NOT he said up until a year ago he thought all this gluten free stuff was malarkey… not sure what happened but he is now a BIG believer! I hope all his patients prior to a year ago KEPT SEARCHING!!!

      Just unbelievable!!

      1. ah Camille!

        I am afraid our work is never done, sweets….yes, we are all full of malarkey…being so sick from gluten and all…..(careful of that dripping sarcasm there, you might get yer shoes wet, doc! )

        Didn’t you almost want to just give him a little accidental kick in the shins?
        I still have a few docs I may go back and kick someday…..for all of us.

        🙂

        1. Irish

          May I ask a favor – if you can? I don’t want to burden you down but I couldn’t think of anyone I would trust more or who is better prepared to help.

          Without burdening you with all of the details, Today, I just talked with my Nurse Practitioner (who helped me obtain my CD Dx in 2012 and whose very healthy husband in his 40s was just Dx with Stage 1 NHLymphoma) and the wife of a dear friend with lymphoma similar to my Mom’s. My Mom’s Neuro’s wife’s best friend has lymphoma and he’s now researching the links between brain, lymphoma & gluten. They are each requesting my research as a direct result of me and my Mom getting healthy again from our diets (specifically what we’re not eating). As usual, I wholeheartedly agreed with your comments in GD’s last post.

          Do you have a “care package” of research links and/or websites that I can send to these three. I am sending my research but I’ve never had time to organize the more than 100 PDFs I have and I can’t currently read them enough to organize. I’m trying to streamline the research for my NP because she has more than she can do now and for my friend because she’s smart enough but because of taking chemo & challenges from the disease she’s not currently physically able to do a lot on her own. Her 41 yr old daughter also has classic CD symptoms that have never been treated or Dx. My lymphoma friend is also experiencing the advanced neuropathy problems you & I experienced.

          They are interested in learning everything they can including all aspects of vegan, whole foods, paleo etc. They each sincerely believe some foods are the root causes of their cancer problems. My lymphoma friend’s oncologist is same as my Mom’s and the oncologist did just refer my friend to a RD after she requested, but the RD retired 2 wks ago. This huge hospital doesn’t even now have a dietician experienced enough to help from a cancer perspective. Another dietician lady is trying to help but she’s not personally experienced. I can’t talk bad about the oncologist because I know she has more to do than she can handle – she treats at least 45 patients every day that I know from being in the chemo salt mine. All these oncologists seem to know are the drug treatments programs and they can’t get their schedules/minds/malpractice concerns around “preventative food treatments”. My NP’s dad died from lymphoma and now her husband is Stage 1 and she’s asking me for help because the med research isn’t cohesive/organized enough that the Drs can say “go look at this”.

          Anything you can provide will be appreciated! Thanks so much! Back to exile – I was only allowed to escape long enough to seek your help.

          Dawn – that’s wonderful news about your daughter. As Jennifer said above, we have to be our own persistent advocates sometimes. Some Drs don’t care but most, like your Neuro, care but just don’t know & can’t know everything and we have to help. We hope for all the best for you & your daughter. By way of encouragement, Mom has endured 3 brain aneurisms, 2 brain surgeries & Stage 4 lymphoma 3 times during the past 20 yrs. and not eating gluten is healing her lymphoma after chemo couldn’t. I just left her laughing away and eating “GF from a dedicated facility” Jalapeño Cheese Straws!

          As always, thanks GDude for helping us help each other!

          1. Hap
            I *think* I understand what you are asking, but I am not sure.
            I hope I have it right.

            (1) this is a comprehensive collection of Pub Med articles
            that some very generous woman has compiled called the “gluten file.”

            I do not know her, but I have often linked to several articles that are also on her data base.
            It’s where I knew for sure my neuro symptoms were related to celiac. look here:

            https://sites.google.com/site/jccglutenfree/

            Also

            (2) if someone is seriously searching for a way to handle food intolerances or to heal from autoimmune disease through diet, I always point people to Elana Amsterdam or Danielle Walker.

            These 2 generous women have compiled a large resource of recipes and dietary advice for those with celiac, NCGS, MS, UC, Crohn’s or other AI diseases.

            http://www.elanaspantry.com/

            http://againstallgrain.com/

            and PS 🙁

            that lovely girl, Danielle, who has helped the GF community so much through her blog and her GF and DF recipes….just lost her child to a rare condition….and yet, she is still sharing her journey with the rest of us, My heart aches for her.
            We should all extend our deepest sympathies.

            I hope this information helps in some way.

            best wishes, IH

            1. Irish

              Thanks so very much – your response was perfect as always! I’ll pass those links along with credit to Danielle and you and everyone else who has sacrificed their time and heart to help others in need by accumulating this valuable info. Just from the time I’ve spent researching during the last 20 months, I can only imagine what a daunting task this collection represents.

              My deepest sympathies to Danielle and please let me know if we can do more to help her & her family.

              Hap

    2. Undiagnosed Celiac almost killed me too, so I completely understand it. I was at deaths door and if they hadn’t found it when they did I most likely would not be here today.

      I’m so happy for this little girl and her family to have found the root cause of these terrible symptoms that were killing her. The only sad part is that she had to get to the point of HOSPICE before they found what it was. It shouldn’t be that way. Hopefully more medical professionals will see this in their patients before it’s too late.

      This is exactly why Celiac needs to be taken seriously. God bless this little girl and her family.

  14. As a mom of a 13 yr old daughter I can’t even begin to imagine seeing my child in hospice. I’m so happy that her daughter finally got the right diagnosis and is healing! Yea normal poop!! 🙂

    I agree with my fellow Texan 😉 theTXLady, celiac should be included with the blood work up as a standard test, heck they are taking blood to test for everything else why not include it? Of course the downside is the false negatives, still wish there was a better method for testing…..

  15. Such a powerful personal story. If only celiac and NCGS were considered in every case, we could save so many more lives and get the diagnosis rate up. I sincerely hope their daughter continues to dramatically improve. The evil power of gluten is pretty incredible. Thanks for sharing, GD.

    Shirley

  16. What a champion MOM!!! You are an example to all. All advocates of others are special and salt of the earth. Everyone should be so lucky to have a strong dedicated person to help them in extreme situations. Slowly but surely all of you advocates are making a BIG BIG difference.

  17. What a moving story. I am so sorry to hear she suffered as long as she did, but I am glad to hear she is on the road to recovery.

  18. Thank you GD! thank you for providing this forum and for your continued efforts to connect us one to another!

    Saw your updates on Mrs. Dude. Hope she is experiencing a gentle recovering. But, did not see a report from your recent testing? Trust your results were good health!

  19. Amazing and heartbreaking to think that there are still people out there claiming this is a fake disease and that we just want attention (e.g. The twit that was tweeting yesterday). Those of us here know better. And while I wish that there were no stories like this and no child or adult had to suffer this way, hopefully as we share more of these (horror) stories people (the public, the media) will start to take us seriously.

  20. Wow, great story, thank you for sharing. My daughter has celiac, she’s 29 now and for years it has crippled her from living a normal life. Because of more people like Jenefer and others it is great to know as families that we are not alone. The more information that we can get our hands on the more it helps us all ! Cathy Horvath

  21. I REALLY wish doctors would look for Celiac disease FIRST. So many problems could be avoided. A great story. Please keep them coming.

  22. Judy Skipworth

    100% of our world population is sensitive to Gluten, and it causes problems for all. A large % of the population is highly affected. It is poison to us. This knowledge is controlled by those who profit from food sources containing gluten….especially wheat that has been genetically engineered to increase protein content. Millions do not know, and they need to know. A Dr Perlmtter (MD) , a board certified Neurologist, has book out, called “Grain Brain” and DVD’s on damage caused by Gluten and sugar. I have reduced intake of both, but still eat products. Gluten may very we’ll be the cause of Alzheimer’s disease as well as sugar. I once saw a book written in the 1940s at my mother-in-laws home about the dangers of sugar. I didn’t want to believe it. It is true. The only way to warn people is by giving them knowledge. Email, texting, etc. folks are so busy they don’t for the most part read books, and choose Movies over documentaries. Hopefully it’s not too late for most. Bread has always been regarded as the Staff of Life. Question is, which one….this or the next…life after life!

    1. “100% of our world population is sensitive to Gluten, and it causes problems for all. A large % of the population is highly affected. It is poison to us. This knowledge is controlled by those who profit from food sources containing gluten….especially wheat that has been genetically engineered to increase protein content.”

      You make it sound like a giant conspiracy, Judy.
      Which is it…… 100% or “a large percent”?

      And contrary to what some alarmists on the internet say, wheat has not been “genetically modified” commercially yet.

      There is hybridization, yes, but that’s not changing the genetic structure.

      In fact, a study published in 2013 in the Journal of Agricultural and Food Chemistry reported “that there’s not really any more gluten in modern wheat than there was in 1920s-era wheat.”

      Read Dr, Fasano’s book Gluten Freedom if you want to understand what happened with wheat and exactly how many people really are gluten sensitive. It’s hardly as high as people speculate it may be. The latest research puts it at more like
      6-15% in the US. Since there are no valid tests for gluten sensitivity, it’s impossible to say how many people are really gluten-sensitive anyway.

      People have already debunked the claims of authors like William Davis (Wheat Belly) and found his claims are not based on valid research or facts.

      I have celiac and for me, gluten is poison, but I know that many people can eat whole grain wheat and they are as healthy as it gets. Well, I say…. good for them!

      Seems like demonizing wheat is an even bigger fad than the gluten free diet.

      1. Just saw an ad for the Perlmutter book “Grain Brain” that said “Gluten is this generation’s tobacco.”

      2. Irish

        Here is a link which may interest you to a very informative/fairly comprehensive unbiased issue of NATURE regarding GMOs, which was given to me & supports your statements above:

        http://www.nature.com/news/specials/gmcrops/index.html

        I have a lot to say about this topic from discussions with fellow attorneys and one of my clients who is a past president of a national “farm crop” association but we’ll save it for later since we could start a website/blog for this topic alone.

        Thanks again for the research links & this comment was just to let you know that I included a copy of Dr F’s book in your honor in each “research care package” for the 3 research requesters.

        Thanks so much!

        Hap

      3. All I can say is: thanks for a very lucid, succinct and rational response. The gluten witch hunt is certainly not helping celiacs.

        1. Margaret,
          I agree that this does not help with diagnosis of celiac. Why? because so many people with vague and confusing symptoms think they may have celiac, so doctors are flooded with requests for celiac testing. When those with true celiac symptoms request the blood panel, they are actually being turned down because of this GF fad. I know this because I have met several people who had a bugger of a time getting some doctor to take them seriously. (myself included) and they were left to suffer as a result.

          This is what I know about the internet. Sadly, the vast majority of people do not do any research before jumping to false conclusions.

          Case in point:

          I could write a seemingly solid & convincing article about why underpants are not healthy for circulation in the abdomen, therefore “celiacs and those with bowel issues would benefit from removing them.” Throw in some fake data (a “recent study revealed that 65% of people with elastic waist undies had a restriction of the ascending colon” blah blah blah) and put some “credential boosting” letters after my name ( MS, Ed.) and soon, twitter and FB would be abuzz with the hypothesis that “ditching your undies” is the key to better health for all …and then, of course we could tack on the message that “a large percentage” of the population should be going panty-free …..and going commando would be the new fad-du-jour.

          🙂

          My plea to all is this: RESEARCH credible sources before spreading info please. And if you cite a resource, give the source so others can see it and know it is genuine. Thanks!

          There are no studies that indicate that “GMOd wheat is causing health problems all over the world”…because THERE IS NO COMMERCIALLY GROWN GMOd wheat at this time.

          1. This underpants thing IS TRUE! Since the invention of elastic and underpants, there as been an increase in the number of cases of Celiac Disease. It has grown even more with the move away from cotton fabric to polyester & nylon. The fact that women wear more of these synthetic underwear than men, accounts for the higher rates of Celiac disease in women.

            Lima Bean, BS in human health sciences, PHD in CS

      4. Nice try, IH. Unfortunately, I think that post was one of those Internet advertisements?

        Just because a plant is bred with another plant to be better, does that make it GMO? I didn’t think so in the common use of the word. Wheat has been bred with other wheats to get a certain breed that grows better, etc. it does not contain any more gluten than it did 100 years ago. In that case, most or all of the flowers you grow, really any plant that has been selected and bred for a quality is GMO.

        I will not be digging up my lovely flowers or getting rid of my dog – both a result of genetic selection.

        I have seen something about some baked goods/ flour mixes having additional gluten added. That would make the gluten count of a bread higher than it might have been 100 years ago.

  23. I am currently in the second week of the “gluten challenge” to see if I have celiac disease. Based on the hours and days of research I have conducted, I am confident I will turn up positive for this disease.
    The gluten challenge has been absolutely slamming me to the ground. I feel awful. The worst I have felt in a very, very long time. Besides the constant stomach cramps, two main things I am noticing is how bad my joints hurt and how crazy I am starting to feel. I can barely get out of bed because my right hip area is so inflamed.
    As I shove gluten back into my body, I can’t help but be perplexed as to how this is the ONLY definitive way to test for Celiac. It’s crazy! It’s like telling someone who may have Melanoma to go bake outside in the sun for a few hours. I think in 10 years from now we will look back on this whole celiac diagnosis situation and classify it as a form of malpractice.
    Cheers,
    Dhead

  24. My son was only 4lbs 2.2oz even though he was full-term. His blood sugar crashed and he couldn’t keep any food down. He was in the hospital for 2 weeks hooked up to various machines and on a feeding tube. As he grew up, he continued to stay small, he had very few words and his bowel movements were unpredictable. He was tested for Autism, and they said that there was absolutely no way he possibly could be, so they diagnosed him with a serious developmental delay. Shortly after he turned 4, both my husband and I had been diagnosed with Celiac, so we took our son off of gluten completely. 2 weeks later, he strung together his first coherent sentence. A few months later, he finished potty training himself. We took him to the alternative doctor that had diagnosed us, and he said our son’s Celiac disease was very severe and had done a lot of damage, and that he wasn’t producing any digestive fluid. So we put him on a supplement to help his stomach acid, and he grew 6 inches in 4 months!! Talk about one grumpy kid. When he started preschool that fall, he was the shortest by far, he ended the year the tallest.
    If we hadn’t gotten him diagnosed, I can only imagine what his health would be like right now. He was always sick when he was younger, and at 8 years, he still catches almost everything that comes through, but he’s not sick in bed for weeks at a time like he was when he was little. I honestly believe that Celiac disease was killing him in the womb, and would have killed him as a young child if we hadn’t gotten him diagnosed when we did.

    1. ” I honestly believe that Celiac disease was killing him in the womb,”

      This is a good point. I believe there are studies that show that a mom’s untreated Celiac (whether the mom is unaware she has Celiac or chooses to not follow the gf diet) does cause miscarriages & other problems in the womb.

      http://www.cureceliacdisease.org/archives/faq/will-exposure-to-gluten-during-pregnancy-cause-any-problems-with-the-baby

      http://www.cureceliacdisease.org/archives/faq/why-does-celiac-disease-lead-to-fertility-problems-in-women-with-undiagnosed-celiac-disease

      1. I have to say I agree with this idea that a mother’s untreated (or undiscovered ) celiac may threaten a child’s health in the womb.
        I had several miscarriages and could never carry to full term and have read many articles on the association to celiac. I did not know I had celiac back then and they did not think to test for that (as they do now) if a woman is having trouble with conceiving or suffering multiple miscarriages.

        Your child did not have celiac in the womb as no one is really born
        with celiac disease. You have to have the predisposition for the disease and it has to “trigger” in some way.

        In any case, I am glad your son is feeling better!! 🙂

  25. I love how I consistently comment on your blog posts and not one person acknowledges what I say.

    Are you guys still salty about my ignorant celiac bashing?

    No love, No love….

    1. I am not on much, so I might have missed your Celiac bashing. I would say that, if you bashed celiac Disease and Celiacs, why would you expect anyone to respond? Are you just here to pick fights and promote you weight loss website? I would think its pretty normal for people to not want to ” help” someone that just makes fun of them and treats the gf diet as a weight loss plan and a way to make money.

      There…. You got a comment! Argue and make fun of me now. I have Celiac disease – diagnosed by an actual MD by blood and biopsy.

    2. Oh….and… By the way….this blog post/ thread isn’t really about you. It was about the child. Maybe you would like to read the original entry? It’s very inspiring – but a bit hard to make fun of a dying child?

      1. Where did I make fun of this little girl?

        No, not here to pick fights. When you have a few minutes, go back and read the comments I am talking about. You may change your tune. 🙂

        And thank you for the comment! 🙂

    1. Back to your question – if you bashed people on here, you can’t expect that they don’t think it is just a trap or that they would feel inclined to help. The second point is that this wasn’t really a section of blog about YOU or to bash the medical community for using the best tests currently available ON YOU. There is no malpractice because you decided to go gf for weight loss or whatever before you were tested. The medical community isn’t refusing to give you tests that would be easier on you, there aren’t any right now. They are working on better tests and you could wait for those if you wanted to.

Leave a Comment

Your email address will not be published. Required fields are marked *

Celiacs rejoice! Get lifetime access to the Gluten Dude app AT A PRICE THAT YOU CHOOSE! Find safe restaurants, locate gf beer, and more!

Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

Follow me on this journey

I hate to drive alone

Download my app

And live a better gluten-free life

Send me a message

I'm all ears

Please enter your name.
Please enter a valid email address.
Please type your message.

© 2024 Gluten Dude: The Naked Truth About Living Gluten Free | Legal Stuff

Scroll to Top