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It's Now Official!
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16 posts in this topic

I am self diagnosing celiac disease.

I failed to last more than 3 weeks on a gluten challenge, and the lab lost my results. My second test was done on 5 days of gluten (i.e. useless)By the time I had my endoscopy 3 weeks ago I had been gluten light about 7 weeks and gluten free for 3. That is on top of being mostly wheat free for 9 years.

So - I am not surprised that the 4 biopsies from the duodenum came back normal. I did find a small hiatus hernia too which they said might be responsible for reflux, but I have not had reflux since being gluten-free anyway. No H-pilori. Stomach normal.

It is a bit of an odd day now really. I guess I was hoping just a bit that something would come back from the biopsies, but really knew it wouldn't.

I have spoken to my GP who will now refer me back to a GI doctor. The GP is helpful, but happy to admit that I probably know more than she does about celiac now, and was happy that I told her I intend to go gluten-free for life.

I am hoping that through the GI I can get some dietary advice, pick up on my blood results (lowish normal on B12 and D) and try and get my kids tested. I am 98% sure I have celiac, and if not, 100% it is Non-Celiac gluten intolerance. I am trying to persuade my Mum to get tested, and think my Grandma and maybe 2 Aunties have it too.

I think it probably started in my early 20s, so is over 20 years undiagnosed.

I have such a history, lots of problems, but no one would put together or see it as related - here's some of the list:

recurrent miscarrages

migraines (2-4 a week at worst)

unexplained vomitting and D

reflux

injuries which refused to heal - whiplash, repetitive strain injury

anxiety, stress, depression

dizzyness

facial twitches, shakes

symphasis pubis disfunction (where the ligaments all stretch too much in pregnancy)

massive PMS, painful periods

weight gain

exczema

and more!!!!

So in the absence of a medical diagnosis, I just wanted to let the world know - that's it, I'm in for life, gluten free and relieved to have found an answer.

And to thank all you guys for being here for the last few weeks, it would have been a whole lot tougher without you.

Thanks especially to the self diagnosed too, it is tough to make that commitment without a diagnosis. Though a gluten challenge which nearly put me in hospital and 6 weeks gluten free where I have had more energy than I can remember for years were quite convincing.

Thanks for listening

Mw

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Welcome to the club! This is a great forum that has helped newbies like me so much...

I sure hope you continue to feel better and better. That alone should help you stay committed to your gluten free life. It's what does it for me.

It makes me crazy that clear, indisputable results from a gluten challenge aren't considered enough for a diagnosis of gluten intolerance

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Fantastic MW!

Bottom line is your health - if it improves without gluten - that is all you need to know. That you react strongly will reinforce your diagnosis regularly as accidents will happen.

I think it's wonderful that you can improve your health by adjusting food and that you realize it without a doctor granting a blessing - My hope remains that with time more doctors will actually listen when we say we cannot eat gluten and some thought-full researcher will find a test for celiac that will be conclusive without returning to eating a food that obviously makes us ill!

Welcome to the club :)

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Thanks very much for your support.

I am hoping too that medical science catches up with us. A test that doesn't involve a barbaric gluten challenge would be good. I'd also like to see routine screening become the norm. 1 in 133 should be telling us something.

It seems a shame that those of us who were a bit tuned in to our bodies and go wheat or gluten free then struggle to get diagnosed.

Still, at least it is not drugs for life. And it is forcing me eat better foods, I was SO sick on gluten-free replacement 'foods'.

Feeling less disappointed today, on with the rest of life...

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I am happy that you made your choice. Now, I hope you get very well.

Diana

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Hi Mindwarp, I too self diagnosed. I wish I had not, but I was too impatient to get all the testing done because my pain had me searching for an answer. I have a sister, an RN who also has fibromyalgia and has a lot of experience with food allergies, autoimmune diseases and her own circumstances. I first reached out to her because many things I was feeling looked like I could have also had fibromyalgia. As we communicated, via email, she probed me for more info. She wanted me to get tested, but she knew I was getting frustrated and wanted an answer faster than making an appointment and suffering for a couple weeks until testing was over.

As we went through discussions about it, she was concerned my symptoms were different enough to be something entirely different. She talked to the doctor she worked for and came back with questions that would more point toward celiac. It was like a checklist of what I was suffering from once we got started and we both continued to research and confirm info. She told me if I wasn't able to get tested and didn't mind not having an official diagnosis, that I could try to go gluten-free and see if that helped any of my symptoms. She didn't recommend it as the proper course to take, but she knew I wouldn't wait so it was the best alternative to official diagnosis.

2 days into it I felt renewed, full of energy and my symptoms were either gone or quickly disappearing. I was glutened 4 days ago and that proved the diagnosis. My symptoms returned in some fashion, but the stomach/intestinal cramping was unlike any I had before going gluten-free. My stool shows no signs of the iron supplement I take daily, which proved I had stopped absorbing it in the last couple days. All signs point to exactly what I knew and it's the only positive from getting glutened. The oily stool returned, D followed by C, fatigue, lack of absorption of vitamins, muscle weakness, dry skin and my heart was racing again one day off and on for a few seconds at a time. Day 4 and I'm almost back to my new normal and it's wonderful. I hope you experience the same wonderful and get to enjoy the happiness that a healthier intestine can bring when you're so used to feeling badly.

I worry about my sons. They get terrible headaches just like I did as a kid. I've ruled out obvious causes like dehydration, environment, allergies, etc. They don't have the physical signs yet of celiac and they both tolerate milk just fine. I'm lactose intolerant and have been my whole life. They were both forced to Soy formula as babies, but they grew out of the lactose issues. I'm watching them, one 16 and one 13 now, but so far they don't exhibit any signs of distress other than headaches and acne. For now, just praying they don't have it, but ready to get them tested if I see changes.

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Hey SMDBill

Thanks for your reply, and I saw in another post your symptom improvements. Wow it is great you are getting such a good reaction.

I would tell anyone to get a diagnosis if they can. However if for whatever reason it is not possible it worth giving gluten-free a go.

Looks like it has convinced you as it has me.

I have kept the list of symptoms I have from my gluten challenge, for if I ever question if I really need to be gluten-free. I dont expect to need it though.

Nice to 'meet' you and good luck

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I worry about my sons. They get terrible headaches just like I did as a kid. I've ruled out obvious causes like dehydration, environment, allergies, etc. They don't have the physical signs yet of celiac and they both tolerate milk just fine. I'm lactose intolerant and have been my whole life. They were both forced to Soy formula as babies, but they grew out of the lactose issues. I'm watching them, one 16 and one 13 now, but so far they don't exhibit any signs of distress other than headaches and acne. For now, just praying they don't have it, but ready to get them tested if I see changes.

Hi Bill-

Just throwing it out there - perhaps your sons should have get a full celiac blood panel now - current testing can be very confusing. With such a strong genetic factor to this disease, I'd get a baseline for them now.

If you had obtained an "official" diagnosis it would be recommended that all your children and siblings get tested every 3-5 years and more frequently should symptoms arise.

It can't hurt and may prevent some very serious health concerns in their future.

Very glad you had such a clear response to diet change - it doesn't always happen so quickly ;)

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Hi again Bill

I'd agree. I am starting the fight to get my 2 tested.

Mw

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Hi again Bill

I'd agree. I am starting the fight to get my 2 tested.

Mw

Hi Mw-

I'm stealing the game plan from Bartfull here -- simply tell your kid's doc that you have been diagnosed with Celiac Disease and would like to have a full celiac blood panel run on each of your children.

You simply leave out the word "self" in front of the diagnosed.

I was nervous to as our pediatrician to have my kids tested when I was "officially" diagnosed - I asked exactly the way I worded it above and doc didn't bat an eyelash. Should they not be familiar, gently educate them with the strong genetic link in Celiac.

ps...there is no official club card - if you look like a duck and quack like a duck - I'll call you a duck - not a self-proclaimed duck - and support your ducklings getting the tests they need to stay healthy!

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In the UK we tend to share a GP rather than have a separate paediatrician, so my doctor is my kids doctor!

.:);)

I have no problem with creative interpretation of my diagnosis!

She has referred me to a GI knowing I want my kids tested. I think she just wants someone to tell her it is ok to test

TBH I will find a way to do it. I might be back for some help with wording.

I'm definitely a duck. I'm just as quackers as the rest of you :) :) ;)

Thanks for your advice and support.

My other tactic is to persuade my Mum to get tested to try and add to my genetic evidence. Working up to that one

Cheers x

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I am hoping too that medical science catches up with us. A test that doesn't involve a barbaric gluten challenge would be good.

...

Here's one. The biopsied tissue sample does the challenge instead.

P.S. I lol'd @ "quackers" :lol:

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Tom

I've always said I was a Zeitgeist sort of a girl. I think I will add the article to the pile for my doctor. She will need to reinforce her desk before I visit again.

Someone cares about us celiacs (or at least can make some money from us which I can settle for if it helps).

I fear we may share a sense of humor...

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Thanks for the advice everyone! I plan to make an appointment for myself as soon as possible. I did some research and found that in the first few months there may be some success finding the antibodies since they keep being produced even after going gluten-free for up to 12 months. I'm only 6-7 weeks gluten-free and got glutened last week so I may have some luck. Either way, the GI and I will have a conversation and they can determine whichever tests they would like to do. I just refuse to eat gluten again so that's my only roadblock. I know how that feels now and I refuse to suffer through that again, especially for a month or more.

I'll post the details of the official tests and the doctor and I will discuss having my children tested. I have 4 kids so that should just be a grand time if they want to test them all :( But, better safe than ill later like I was/am.

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I too have a small hiatus hernia. Blood test don't show any signs of celiac disease. Also my guts were tested and are almost fine. Even if it doesn't show up that you have celiac disease you probably would have to stick on your diet.

Edited by Imre
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    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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