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20 Comments

  1. 1

    Amanda Simpson

    Unfortunately this is exactly how most people react, even when it’s formally diagnosed people still don’t take it seriously and are convinced you’re just exaggerating things to gain attention or to get your own way on things.

    When I explained to one person why I couldn’t eat normal sandwiches, the response was surely you can live with the consequences now and again, it can’t be that bad! I then explained that apart from everything else it was potentially life threatening in the long term and he was shocked.

    Most recently I went to buy some mayonnaise and my husband wanted me to buy the cheap brand, when I looked at the ingredients it showed that there could be gluten in it whereas the big brand one was fine, so I obviously picked up the big brand one. He was annoyed and said, surely you’ll be fine with the non branded one!! It caused a bit of a row and although it wasn’t definitely stating it had gluten I didn’t want to risk it as I’m still not 100%. He is asthmatic although hasn’t had an attack for years but believes his illness to be far more serious than mine!! Unfortunately as the illness isn’t a visible one people just don’t understand.

    Reply
  2. 2

    IrishHeart

    I am one of those people who believes there are no coincidences. :)

    I applaud you for relentlessly pursuing the CAUSE of your babe’s declining health. And I am thrilled for YOU that you have found the answer to your own health issues!! Gluten intolerance of any degree causes all those symptoms (And there is plenty of science and medical literature to support this, if your parents and doctors want to educate themselves on it. )

    And I am betting one or both parents have symptoms that smack of gluten intolerance as well.This does not just randomly happen–it is genetic..

    Do not listen to naysayers, hon. Do not doubt your maternal instincts.
    Above all else, continue to be your own best advocate.

    Please, don’t waste any more time being bitter and angry (although I really do get it. I spent most of my life thinking this was just the way it was supposed to be and the 3 years before my diagnosis dying a slow and painful death) I had a lot of anger, too and I had to get past it so I did not lose one more minute to being ill in body, mind or spirit..

    But you are young and have a child!! (this is, sadly, something many celiacs do not have as a result of infertility) so, please, just be happy you are both healthy and ENJOY your life . :)

    I send you and your child warm wishes for a long, happy life. Many blessings!

    Reply
  3. 3

    The Atomic Mom

    Food allergies are NOT rare! Not in this day and age….what rock are these doctors living under? I am so very sorry for this mom and her baby. But, I am glad that she has found relief.

    Reply
  4. 4

    Jen

    What a great mommy you are – your baby is blessed indeed! Your persistence and instincts have saved your child. Big pat on the back for you, and a smack in the face with a chair for the doctors.

    Reply
  5. 5

    M

    I am the wife of a gluten intollerant husband. I watch out for him because he can’t do this alone. We have faced the same non belief from friends, family and acquaintences. They think we are being trendy. I tell them that since the diet change, I no longer have to know where every possible bathroom is wherever we go. I no longer feel like a single parent to our kids. My husband isn’t sick in bed for the day. These facts seems to get to them.
    Recently, at a family reunion, my husband was “glutened” when the local pizza place’s supposedly GF pizza turned out not to be. I think that was a wake up call for the extended family. Everyone was quite alarmed at my husband’s condition and pleading with him to see a doctor when he got home. Try finding a doctor to agree with what you already know to be the truth. No gluten for you!

    Reply
  6. 6

    Stan

    Kudos for you Mom! I had the same experience. Some people think this is a joke and that gluten can’t be that toxic. I also was frustrated about all of the lost time but it is just that, lost time. Experience and education mean good times ahead.

    Reply
  7. 7

    Donna

    my husband was making some toast this evening and my 4.5yo asked if he could have the little toast (some of my gluten free bread) because “the big bread makes him cry”. so many subtle symptoms. come on appt for the paed. :(

    Reply
  8. 8

    Michele

    I am so glad you found out now. This will save your child from so many health issues in the future. It makes all of the difference to have a good start in life. Wishing you both the very best. <3

    Reply
  9. 9

    Claudia

    So far I have not had problems with my family or doctors. I found out fairly easily. But since I don’t like going to the doctor, I was suffering for about 2 1/2 years with pain, severe constipation, and bloating, as well as anemia. But since I am the only one in my family with the disease, it makes it hard even eating at relatives homes. I usually have to bring my own food, and my family thinks I am an anorexic. I have lost a lot of weight, but not because of anorexia. Everything must be scrutinized and it makes one appear strange and obsessive. Oh well at least I feel better.

    Reply
    1. 9.1

      Jamie A

      Claudia – I have had a very similar experience. My family has accused me of being anorexic and having body dysmorphia. I am slowly educating them and also telling them to get tested because it is highly possible they can have it too. Sigh.

      Reply
  10. 10

    Celiac Mindwarp

    Well done Mom for sticking to your guns and finding out what you both need.

    My son had similar symptoms, not as extreme, and I told the doctors he was reacting to milk, and was told I was wrong. I was also told there was nothing they could do if the one eczema cream we tried didn’t work so he ended up in the emergency room when it broke down and wept. I told the doctors when he was 1 that I thought he had asthma, but it took repeated nebulizers and 2 overnight stays before he was finally diagnosed at nearly 4. ‘Luckily’ the anaphylactic reaction to nuts was hard to deny.

    I went gluten free a year ago, and have revolutionized my life. My son asked to go gluten free because his tummy hurt after eating toast in the morning. So far so good.

    Stick with it. I firmly believe that celiac and ncgi folk will lead the rest of the world in returning to better eating.

    Eat well. Be healthy and happy.

    I agree with Irish Heart about not letting anger have any more of your life. I had 20 years of bad health, many miscarriages, lost a job, had to move. I sulked for about 6 weeks about everything that could have been different. Now I get on with life and enjoy every possible moment.

    I wish you and your daughter the very best

    Reply
  11. 11

    Rachael

    Mama warriors!!! You really did an amazing job despite having so much stacked against you. Your baby is lucky to have you. I ache for how long it took and I ache for all the people who are still suffering. The stories need to be shared.

    Reply
  12. 12

    Lea

    Before I went gluten free, I weighed about 200 pounds. My ankles were horribly swollen. You could press your thumb into the side and leave a deep depression that would last for quite a while (pitting edema). My days had to be planned around horrendous IBS. I had to know where the nearest bathroom was for at least 2 hours after each meal.

    It took me years to figure out that none of that was normal. About 3 days after stopping gluten, my ankles were no longer swollen. Another week or so and the YEARS of IBS symptoms were almost gone. My complexion cleared up. People who know me now are shocked when they see pictures of me when I still ate gluten.

    My celiac test came back negative, but, my doctor says that I’d been GF for long enough that the antibodies they test for were likely gone. She suggested that I eat gluten for a couple of weeks and come back to take another blood test. I declined. She declared me officially gluten intolerant and asked if I wanted a referral to a nutritionist for help with figuring things out.

    I mentioned all this to my seventy something year old mother. She thought about it for a second or two and said, “Damn. I wonder if I have the same thing.” She does and has gone GF as well :)

    I’ve had a wonderful support system throughout my GF journey. There’s an occasional stinker, but I don’t let them bother me for long.

    Reply
  13. 13

    Hannah

    I’m so glad you figured it out and you are both ok now! People are just plain ignorant. Just because they can’t comprehend something, in their mind it doesn’t exist or can’t be true! Thank god my husband, who has celiac, helped me realize that I do to. He watched me suffer for the first year and a half of our relationship. My symptoms finally got so bad that he convinced me to go gluten free. Within two weeks of being gluten free all my pain and sickness was gone just like you. I tried reintroducing a tiny bit of gluten about a month later and was sick for a whole week. Sorry but doctors don’t always know what’s best! It’s your body… You know it best!

    Reply
  14. 14

    Anna

    I’m so tired of that mentality! My own GI doctor told me that gluten free was just a ‘fad’ and that I had no reason to believe that I had celiac, even after I had a positive blood test, my symptoms improved going gluten free, and I got diarrhea every time I consumed gluten. My endoscopy came back negative, but by then I refused to go back on gluten, and after hearing him say that celiac was a fad I seriously doubt that he’d done the endoscopy properly anyway.

    Funny thing was, two days after being mocked by my GI and being told the illness was all in my mind, I took a sip of a friends drink at a party after she assured me it was gluten free and safe. The next day I was on the toilet all day and came to find out that the drink actually contained beer. So after consuming gluten with absolutely no knowledge that I did so, I got sick. What a coincidence!

    Reply
  15. 15

    Jeanne Reid

    Great job mom! I can relate to your story, mine has many similarities – very sick baby, bad doctors, I stopped following doctors orders, tried gf & he got better, and then we all learned – celiac was a family issue. Every night as I watch my beautiful little boy sleep, I remind myself –
    I saved his life And he saved ours.

    I know that bitterness and anger all too well -I use it as motivation – to learn & promote awareness & doing what I can to advance the cause.

    Reply
  16. 16

    Rachel

    Sorry, Gluten Dude, for being a little late catching up on reading your blog. I love this post (and all of them, actually)! This reminds me of a recent Facebook post by one of my favorite fitness professionals. She stated that despite a negative celiac diagnosis, she decided to go GF several months ago and felt great. Then she ate gluten on purpose to see if she felt a difference, and she did! She even posted before and after pics. In the first photo, she looked really thin and fit, but in the second picture she was really bloated. I must say, she has more guts than me, as I would NEVER be caught showing off my stomach after eating something like that! Normally it’s flat, but when I eat gluten or lactose, I could pass for 5 months pregnant. Anyway, someone commented on the post saying “imaginary food allergies are very trendy these days…” and it made me soooo mad! I wanted to post a bitchy reply, but the owner of the post had already responded intelligently to it, so I took the high road. In my mind I’m still stewing though. Ugh.

    Reply
  17. 17

    ajponder

    yep – they don’t call it indoctrination for nothing. They can’t even get their heads around 6th form bio if it contradicts some useless fact they’ve been taught – but said useless fact doesn’t work because of ACTIVE TRANSPORT – I’m sorry but I’m not paid to think, or to have an opinion, or even have basic observational skills, I’ve been taught stuff. Oh, the reading says something strange – “…placebo…”

    Reply
  18. 18

    Janet

    It’s wonderful that you were able to pinpoint the cause of your baby’s discomfort and ill health, and of course also your own! I think people are very reluctant to admit food intolerances and allergies, because the very existence of them is proof that we are not eating food that belong in our bodies. And to realise this fact is to admit that we are being lied to and being harmed by the brands and companies that we have come to trust. Before people will grow an understanding and compassion towards Celiacs and lactose intolerant people, they will need to be honest with themselves about the foods that they eat. I think a revolution is brewing – allergies are just becoming SO commonplace that people will have to stop ignoring it or wishing it away – calling it coincidences…

    Reply
  19. 19

    doree

    Wow……this is a shame we are going through so many health issues and people just don’t get it!! I’ve been having quite a few years dealing with declining health between my daughter and I, and finally learned that leaky gut is a cause of my extreme depression and her allergies. Going to the allergist do you think they would test for gluten allergies?? Nope I was told they didn’t need to because she wasn’t having certain symptoms even though people in the family have celiacs. Now she’s been so sick with painful cysts and gastritis and bloody stools she’s having an endoscopy and colonoscopy tomorrow, but two gluten tests came back negative so again they just don’t want to think outside the box. Not sure what they’ll find but wondering if insurance would help pay for dietitians since my brain is so on fire I don’t know the first thing about gluten free let alone cooking I just know I have to make drastic changes in our diets, but no support from family because they are just like this. ……it’s not what she’s eating so stop trying to control what food decisions she makes. Sigh. ….if I can behave and be strict with ‘me’ maybe my head could clear up anyway.

    Reply

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