Newly diagnosed celiac

Hi can anyone help I am new here this is my first post.

I was diagnosed with celiac back in May 2016 I had a ttg level of 2400 rising to 3000 and now at 500 despite being on gluten free diet for months. I am still plagued with fatigue stomach cramps joint pain and leg cramps at rest and lots of other symptoms . I don't have diareah or constipation just cramps most days. I'm not knowingly eating any gluten and I'm very careful with the diet. But my symptoms persist and my doctor said my Ttg levels are still too high? I don't know why and I don't understand. I have total villi atrophy and I know that will take time to repair. I am feeling desperate . I have had , sigmoidoscopy and small bowel scan with normal results so that's reassuring but I don't feel any better . Could high Ttg come grime anything else ?

14 Replies

oldestnewest
  • Hi Dawn,

    Welcome!

    Your post reminds me a little of myself a few months after my diagnosis. I was doing everything right but still having problems. It was somewhat of a crazy and frustrating time.

    Ok, firstly the TtG level issue - in my opinion, you're doing fine. Yes it is still high, but look where you started from! I seem to remember that it took over a year for mine to go back down to normal.

    To this day I still sometimes have issues with fatigue and the medical profession don't seem to be able to help me much with this one. However, I know that eating soya makes me worse - as does eating dairy. Whilst you should consider that you may have other food intolerances, at the moment this likely to be a secondary issue for you. Possible vitamin and mineral deficiencies caused by having Coeliac Disease is much more common. If you haven't already, I would suggest going back to the doctor to have your B12, Iron, folate, vitamin D, magnesium and potassium levels checked. Vitamin D is needed to absorb calcium and you may be deficient in calcium as well.

    I was seriously Vitamin D deficient and borderline magnesium deficient. On top of this my cortisol levels were also slightly out of whack due to all the stress they had been under coping with an undiagnosed disease (so you may want to ask your doctor about this also). Things improved for me once my GP put me on B12 injections and I had a referral to an Endocrinologist. The Endo sorted out the vitamin D issue and did some of the other tests I had; but all this didn't start happening until around the stage you're at now. I was also prescribed AdCals for bone density issues.

    I had to sort out my own magnesium level once I knew it was on the low side. I found it to be very true that some magnesium supplements cause diarrhoea! Be choosy if you decide that you need to try them. I now only take magnesium as part of a multivitamin, plus I sometimes take magnesium ascorbate instead of the more common forms of Vitamin C, which also helps slightly.

    Cramp is thought by some to be caused by one or more mineral deficiencies. Getting the medical profession to agree with this idea however, is not always straight forward. All I can say is that I have cramp much less often than I used to.

    I hope this helps.

    Good luck!

    Ps. Although this is really obvious, do also ensure that you are drinking lots of water everyday- dehydration is by far the most common cause of cramp.

  • Thank you some great advice . I am awaiting results of vitamin bloods x

  • Hi Dawn

    Along with the advice from RB, I would add that it's usually a good idea to avoid most of the supermarket ready made gf foods. The additives can be a source of problems and may not help with healing the gut. Stick to single ingredient foods, veg, rice, meat, fish etc. Perhaps consider some pro-biotic and pre-biotic foods or supplements.

    Good luck.

  • Thanks for reply I am some what sceptical of GF foods . What about GF oats ?

  • Oats seem to be a problem for a lot of coeliacs. Probably best to avoid them for the time being.

  • Hi dawn your not a lone babe I av been a coeliac for 15 yrs so yur only a newnie to it but I get the pain cramps & no constipation & dryie I get the cramps all the time in my legs I have been on a strict gluten free diet & still I get glutened & feel alful with it I only buy food thats says gluten free & now I go for free from gluten & free from wheat from tesco becouse gluten free is pt gluten a little minute wat coeliacs can tolerant but if yur like me & you are still getting the damange just dont get gluten free brands go for free from this disease is so complicated & you av got to watch out from cross contamination babe have you got yur own toaster so no bits goes in your food crumbs are my downfall I am so vigilant when I make my food I dont even trust my family becouse I have been glutened so many times with them like putting things in the microwave and then putting my ready meal in it without washing it I could go on forever dawn the do.s & donts to do to be safe but wat I say all the time with my food labels is if am in doubt I defo leave it out take care & babe get to see a dietitian

  • & oats I would not eat even gluten free oates try rice flakes in asda they are so nice like porrige

  • Thanks for reply it's a nightmare I am seeing my dietician Friday I may just go totally fresh . If it grows in the ground or on trees Ile eat it , along with fresh fish & meat. Here's to a boring food future lol. Thanks again

  • It can take some getting used to, but it doesn't have to be boring.

    Going fresh is the healthiest way for everyone to eat, if possible. There are lots of tasty gf recipes on line or in cookbooks. Perhaps also have a look at food from other countries like Indian, Tai or Mexican, as they often use gf flours like chickpea or corn instead of wheat.

    Other alternatives to oats are quinoa or buckwheat flakes. I make my own buckwheat granola, from a recipe by Hugh FW.

  • Thanks I've seen that in tesco I will give it a go .

  • As echoed earlier, TTg levels take a while to go down. Total villous atrophy means you won't absorb nutrients, so why not go easy on yourself and stop thinking you have to eat like before or you'll be bored, and start thinking you eat to live.

    In the first year I'd say avoid eating processed food. That goes for the free from isle. Give your gut a rest. Take pre and pro-biotics to get good gut bacteria. Take Vitamin D. Eat smaller meals. Don't have oats, not yet anyway. Drink more fluids. The healthiest coeliacs I've met have had the plainest diet - and that's all we really want, to feel well.

  • I have been a coeliac for about 12 years now. When I was first diagnosed and put on a gf diet my health improved dramatically after a couple of months. For the past few years I have been having a problem with a swollen mouth, just my lips, which burn and feel numb. No-one in the medical profession knows what is causing it and are not really interested either. I went to see the dietitian who suggested keeping a food diary. I did.

    The foods that were making my mouth sore were gluten free manufactured products, all brands. It would appear that the 20ppm of gluten allowed in gf products is enough to upset some coeliacs. My tTG was 8 which is good. However, our coeliac nurse said there was another patient who managed to get her tTG down to zero and felt lots better. I think I need to be 100% GF which is really difficult. Even the gf flour upsets me.

  • Hi, odd question but are you eating oats? I appear to have an intolerance to oats and found I had exactly the same symptoms as the Coeliac disease which I also have. If you are having oats it may be a good idea to cut them out and see what difference that makes? It made a huge difference for me. If not oats then it may be sensible to go for allergy testing if you haven't already. PS I'm new to the game too!

  • Hi Amayteach

    Yes I have seen my ditician and yes it seems some coeliacs can't tolerate oats . I'm obviously one of those so I've had to give the oats up for good at least until my TTG levels get to a normal level and my intestines recover.

You may also like...