New here hoping for some guidance

Hi all,

I haven't been diagnosed with Celiac, but have many of the symptoms and multiple other autoimmune disorders. My doctor doesn't want to run the tests. He basically stated symptoms are symptoms and if they go away with treatment what does a diagnosis matter.....He wants me to go gluten free for 3-4 weeks and see how I feel. Once I completely eliminate gluten, how long should it take to see if there is an improvement? And, if I've eliminated gluten, will any of the tests for celiac even be accurate? And last but not least, is there such a thing as a gluten allergy or intolerance but not celiac? If so, do I completely have to eliminate gluten or just stay away from large amounts of it in things like bread and pasta.

Thanks in advance for any help or information that can be offered.

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10 Replies

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  • Hi, i see you have the misfortune to have PA with. Sub acute and that you SI, are you still doing so and how often?

    I am surprised at your dr not running bloods at the very least to see if you are infact coeliac because it might be the reason you are b12d.

    I found i was coeliac because i was b12d, so yes you could go gf for a few weeks to see if it does make a difference, depends on the original symptoms but it still wouldnt necessarily be concrete proof.

    It took me six months for my blood ref numbers to drop but as i am still recently diagnosed i havent had a second scope to see if my stomach is in fact healing as well as it should and i have been warned that the damage was 'significant' and therefore might not heal.

    Yes you can have intolerances to certain grains etc rather than full blown coeliac. I cant have barley malt(vinegar) on top of being coeliac despite it being considered 'safe'.

    As far as i can remember if you have a coeliac diagnosis it can take up to five years to heal, although for many its not that long.

    Take a look at coeliac uk site it is very informative even if you are in another country.

  • Thanks very much for your reply. Apparently I'm b12 d because I have what my hematologist calls "true" Pernicous Anemia. I have multiple other autoimmune diseases and unfortunately the symptoms are seem to overlap. I'm told once you have one or a few disorders, the chances of more increase. It seems that my symptoms overlap with those of celiac as well. I'm just looking for any reason possible as to why I'm still not feeling well.

    The symptoms of the my sub acute have healed to the extent that I can tolerate what is left over, I'm still self injecting 2 times per month. According to my gastro, my last endoscopy didn't look great. She said my stomach was fryable because of the PA. I know that my stomach hasn't improved in 2 years because it still bugs me. Is it possible that the condition of my stomach could be causing the malabsorption issues that mimic celiac?

    This whole situation is very confusing. I much would have preferred to have had the tests before starting the physical and financial burden of going gluten free. I'm just hoping it helps!

  • An accurate diagnosis can be important. You really need to know if you need to eliminate all gluten or not.

    coeliac.org.uk/coeliac-dise...

    If you are cutting out gluten, stick to naturally gluten free foods (rice, veg, fish, meat etc), and try to avoid the ready made supermarket foods. They are far too expensive and often full of additives that can affect a sensitive stomach.

  • Thank you for the feedback!!

  • The trouble with cutting out gluten to see if it helps is risky as if it does help you will have to eat gluten again to obtain a proper diagnosis and you may not get one by trying this route.

    With the blood tests available I can't understand why this was not done before telling you to try cutting out gluten.

    There is a condition called non celiac gluten disease,

    Marsh has a classification for different stages of gluten atrophy the more severe the damage the longer it takes to heal.

    look on the internet site of NHS for NICE guidelines about Coeliac disease this could help.

  • I once asked an eminent doctor in the field of gluten issues what you had to test to cover both coeliac and gluten sensitivities. His answer was:

    ''The test should include IgG and IgA antigliadin antibodies, endomysium and transglutaminase antibodies. If all negative it is highly unlikely that the patient has gluten sensitivity.''

    You could consider having the tests done privately if you could afford it. I agree with the others that if you just cut out gluten and feel very marginally better, you won't know whether that is a coincidence or not. You need a proper diagnosis via antibodies, especially as you have other health issues which 'overlap'. Best of luck, I hope you find out properly.

  • Hi babe patricia here if you are getting tested for celiac it is hard enough getting the right results for it & if you go gluten free it is going to take forever to get a possitive diagnosis so if I was you I would suffer the horrible symptoms for a while & eat a lot of gluten to get the right results you need good luck dont suffer like I did for yrs thinking it was ibs untill I got so ill & had to have a urgent blood transfusion becouse I had severe anemia brought on by not getten the right nutrients & eaten gluten I lost so much weight patricia

  • Go back, get the bloods done. You will be messing about not knowing anything if you go gluten free first. You'll only have to do a gluten challenge later and that could make you really sick (see feedback from other).

    You're currently in the best position for a fairly accurate blood diagnosis - you'll either have antibodies or not. If you start a diet the results will be skewed, so not advisable.

    The GP isn't following the clinical guidelines. Telling you to cut out gluten if you aren't coeliac is silly - there are many beneficial proteins, fibre and vitamins in the grains you'd be avoiding. Tell him this. Coeliac UK would tell you this. So get the bloods done.

    Good luck.

  • Thanks to all of you for the input and support. Your help has been much appreciated! Based on all the feedback i received here, I went to see my gastroenterologist who is also managing me due to the digestive issues caused by my Pernicious Anemia. She was very upset to hear the direction I received from my regular doctor. She doesn't think I have true celiac because she biopsied a small portion of my small intestine during an endoscopy 2 years ago and said it looked fine. I had no idea she had been so efficient then. Due to the small possibility that I could have something called "patchy" celiac, she drew blood just to be safe.

    Since I also have IBS, she put me on a new medicine called Xifaxin and the Low Fodmaps diet. She said it could also possibly be Pancreatitis. If all else fails, then she'll try me on a gluten free diet.

    I hope all the blood work comes back negative. I took a look in the gluten free isle of my grocery and was horrified to see how expensive it all was.

    Thanks again!!!

  • Ok. My tuppence worth.

    I tried gf. I felt wonderful. My gastro then exhorted me to suffer the awfulness of ordinary for months to get " a proper diagnosis". CT, biopsy bloods all inconclusive.

    In my view it is my life, my time, they are wasting not their own. I felt like crap. Miserable, uncomfortable, bloated. Gf solved all these problems and yes, I too have five autoimmune diseases with overlap, but I have had enough struggling through. As far as I am concened if I can get out of my chair and potter instead of lying in it merely breathing, I have some quality of life back and I will do whatever makes me feel better, marginally I'll allow, as we all know the fine margins between good and bad days.

    This is not a rant, just a heartfelt plea to not be slavish to test results, most of which the ' guidelines' say we are ' in range with', like bottom end of iron, haem etc etc which they say is ok but we feel is not. I've been pleading for iron injections from my GP to get near to an optimal level but still getting grief. Cant have iv iron infusion unless haem 6 or below. Do they understand how bad you feel at 12?

    Sorry off point. My meaning is that while they fiddle around or block us, we feel lousy. You are the one suffering. As long as you research, dont do anything harmful, giving up gluten is neither life threatening nor cautionary. If in doubt, supplement for vitamins. Yes it can be expensive but check out Aldi, they do a great range but you have to call in as it is not there all the time in some stores. The aisles and freezers are growing in number in Tesco and Sainsburys is particularly good. I'd rather spend a bit more to enjoy my food than save and be miserable. You pays yer money and yer make yer choice.

    Feel better ok, whichever way you go about it, but feel better.

    Best wishes

    ⚽️

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