New here and newly diagnosed celiac disease

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Hi, yesterday I was told I have celiac disease. I'm not at all 100% that I fully understand what it is exactly yet. I have a dietician referral and was told to join a support forum as well as to get a prescription for staple foods from my GP.

I have multiple health problems. Most are auto-immune and was told if you have an auto-immune disorder the likely hood of getting others is very common.

I was also told that celiac could affect a person in one or both of two ways, the first affecting bowel habits and the second iron levels and liver function. He felt my bowel problems were more likely due to my medication and feels I am far more affected by the iron and liver function levels.

I really am always shattered. So tired I could and have just fallen asleep mid conversation. I just can't keep my eyes open. I've suffered with anaemia for years though. But it has been extreme of late.

I'm not at all sure how the liver function would affect me? There have been times when I've been very ill and needed an NG feeding tube for months but my eating has been fine for a good year. However although eating well I took poorly Xmas eve and after having bloods done was asked if I'd been eating??? It seemed very strange that was asked but nothing more was discussed about it. So when my consultant asked if anyone had mentioned liver problems before that was the only thing I could think of

Other than the health conditions I have, I don't drink or smoke and have always had what I thought to be a good diet also.

My consultant wants to see me back in two months after cutting out the gluten from my diet, getting back on folic acid and hopefully levels will start righting themselves out.

If anyone could help with further information re the celiac that would be a great help.

Also celiac specific support forums in the uk. My consultant recommended I join one but the only one I can find in the uk wants a membership fee which I simply can't afford.

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  • Posted

    Hello and Welcome, Ria!

    It's a complicated disease with multiple ways of hurting you, not merely one or two.  What's key is that it's autoimmune, which you understand, and that it damages/breaks down the villi in the small intestines. From there, your body can't effieciently digest food and along with other issues, you may have slight to severe malnutrition. It sounds like you fall on the severe end of that.

    Like other diseases, if you know one person with CD, you know one person with CD. Everyone's different. In my son's case, his liver and his bowel habits were fine. He was just fatigued/tired allllll the time (as a young child) and suffered too many aches and pains - head, joints, stomach, everywhere! Plus he was cranky...angry even...a real mess! (he has other issues including food allergies and chronic eczema that haven't improved on GF diet so that's totally different) He's tall for his age...just not what you hear about a child with CD. He was tested at age 5, but turned 6 by the time he had endoscopy/biopsy and results. 

    There is a FB page, I believe - others can help you more locally than I as I'm in the U.S. But, this site is a gem for support and information!  Please read around on this site under both this topic and under Pernicious Anaemia.  You may have PA as well, or just very low B12 from malabsorption!

    And, you have other areas of malabsorption, too it seems. You will take a while to heal - like months or a year even.  But, you'll feel better by that 2 month appointment and you'll be a New Ria by 6 mos.   Keep getting blood tests to be sure you're not getting accidental gluten ingestion and that your gut is healing and working properly to absorb and digest food.

    HUGS to you, Ria! You have a long way to go, but it sounds like you're going to start healing now. So much of what ails you will get better in time. My son still suffers from eczema and struggles emotionally with the diet and it's exclusions but he's the sweet kid, the happy kid, the active kid we knew he had hidden away through pre-school!  (He's 8 now)

    Please keep us posted!

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    • Posted

      I appreciate the welcome Aveline - thank you. 

      It always breaks my heart hearing of a child dealing with any medical problem, but from what you wrote, I get that you have a great little soldier there, who may struggle, but marchers on regardless. Children's resilience through hard times in their lives will always amaze me. 

      Thank you you for your response. I too have eczema....I was diagnosed about two years ago with it, although upon reading a little this evening I believe the skin can also be affected, so I'm now wondering if I have eczema at all and if my skin flare-up are simply a direct result of the celiac. I did ask my consultant how long he thinks I've had this too and he was very confident that I'd had it for years. Knowing that, as he was joining up the dots to give me a diagnosis, ive been joining a few dots if my own with illness in the past that could also have a direct link...

      i dont one know what the future holds, but your confidence that I will feel better after changing my diet is contagious and has this evening brought a smile to my face. Thank you Aveline. 

      Ill be be off now to search the suggestions given 

      big hugs coming back for you....and your brave little boy too. 

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    • Posted

      Thanks so much for your kind words, Ria! Especially when you're going through so much yourself at this time...

      My son has his good and bad days. He has food allergies, so a little restricted to begin with and I just co-founded a support group locally for children and their families who are gluten-free for any reason. So, he's not alone and he'll meet with others like him regularly for years to come. smile Some also have nut allergies, some even have diabetes (which he doesn't) so he can see others who are dealing with even more than he is.

      Yes, funny now that scientists are looking at eczema as auto-immune! They're trying rheumatoid arthritis drugs as an eczema treament at the moment (in trials). We got his diagnosis from a pedi rheumatologist since I thought he had something "systemic" but I didn't know what. I was floored that it was CD. He doesn't have DH so his skin's still bad and we're 2 years post-diagnosis...sigh. I hope your condition clears as you heal!! smile  In a way, it's easier for little ones since it's the parents who do the research, shopping, cooking, etc. We're teaching him to carefully order his own food on the rare times we go out to eat. He can ease into the nitty-gritty instead of doing his own leg-work from the start.

      There are so very many out there like you! They deal with so much and stay on the strict diet and it's mainly because they feel so much better for it! I see huge changes in my little guy! It's not easy (ever) but it becomes more "normal" and less burdensome as you go along. Some find their other auto-immune symptoms are lessoned, too. There may be forums for other issues you're facing (as you said it's not your first AI condition). We're finding a silver lining in new food, like easy pao de queijo that my boys love and I'd never know of if I weren't digging around for easy GF recipes!

      Since you seem to have pretty bad villous atrophy (did the dr. say what stage?), it will take a while to heal and you can't properly break down the lactose in dairy items...have you found that to be a problem? We didn't cut out dairy but used lactase enzyme pills (Lactaid here in US) so he could digest it better. Lactase is produced in the villi - when they're healthy. He needed that for 4-6 mos, now he's okay (but my non-coeliac son takes them, go figure).

      There are support forums with local info and I think if you search this forum you'll find links/names. GL!!!

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  • Posted

    Hi Ria, I too had multiple auto-immune problems and from the research I've done I believe they were all triggered by a long-term undiagnosed Coeliac condition. I assume you have had a positive blood test AND biopsy ?  You don't mention your other auto-immune responses but Thyroid failure would certainly be a strong possibility for an undiagnosed Coeliac. You'll find that a Gluten Free diet will utterly transform your health, although it can take time, depending upon how long you have been suffering undiagnosed. I returned for a follow up biopsy after 2 years and the healing process was still ongoing. Bones have a 7 year cycle of replenishment and will require a calcium rich diet and some regular weight bearing exercise to regain full strength.  The really positive thing about being Coeliac is that we all tend to be more attentive to the needs of our bodies than the average person and become fitter and healthier as a result :-)  Reading food labels was a revelation to me, with the result that many of the foods I once ate I realised were junk, or worse !  And, that it's almost as quick to prepare good food from fresh ingredients as it is to heat up a plastic pack ready meal.  Oh and don't be fooled by 'low fat' labels because all they do is replace fat with sugar and what happens to sugar when we eat it, it turns to fat!  I also now pop a few pills, Organic Calcium, fish oil, vitamins (especially D and Magnesium for bone health) and some medication, Thyroxine in my case, of course ;-) No Iron required any longer, since my gut has healed, but I maintain a good bone health regimen of minerals and exercise. I believe that being diagnosed Coeliac was the best thing that happened to me and has been a really positive and energising experience. The only way is up for all of us, so be positive and reap the benefits :-) I wish you good health and happiness, Mark.
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  • Posted

    PS  With regard to Osteoporosis, the GP will automatically prescribe a Bisphosphonate treatment, Alendronic acid or similar, combined with a high dose calcium and vitamin D supplement. I was offered this and from my own research as a layperson I decided after starting this not to follow through with this course of treatment.  I could see that for an elderly and frail person it would be the correct thing to do but it has side-effects.  For myself, I decided that with a healed gut I could introduce a calcium rich diet which, combined with exercise, would strengthen my bones naturally, albeit more slowly. I must emphasis that this was the best decision FOR ME. I would encourage anyone being offered Bisphosphonate treatment to do some research first and discuss their choices with their Doctor as I did. Fortunately my Doctor was quite happy to let me do my own thing and it worked out fine for me.
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