No cd diagnosis, no gluten, no improvement. What next?

On the suggestion of a private GP, I went gf in April. My coeliac blood test was negative, but I had various intestinal issues - gastric dumping, two bouts of diarrhoea lasting two weeks or more (a stool sample showed nothing) - plus fatigue, brain fog, joint pain, extreme vit D deficiency and anaemia. I also have Hashimoto's and psoriasis. The doctor I was seeing takes a holistic approach and I think she wanted me to try a gf diet to see if I felt better.

For logistical reasons, I'm no longer able to see the same doctor. I'm still gf but I feel no better than before at least as far as the fatigue is concerned, and though I've had no further bouts of diarrhoea, it was always an intermittent problem anyway. I've been very careful with my diet, I'm aware of the cross contamination issues, I read labels and ask questions and I'm confident that I've done my best in terms of keeping gluten out of my diet. At first I also took a tonne of supplements and was dairy-free for a long time, though I've introduced a little dairy to make up for what I'm cutting out.

I think the fatigue is caused by my hypothyroidism being undertreated (though I'm now seeing a specialist and I'm hoping this will improve). My dentist has referred me to a specialist because she suspects I may have Sjogren's syndrome, which also causes fatigue.

On one hand, I can cope with the diet. There's nothing I miss enough for it to bother me too much and I'm used to it now. On the other hand, it's annoying and expensive and I fight a daily struggle against constipation despite eating veg, flaxseeds, etc. Throughout this experiment I've felt justified in doing my best for my health but I feel increasingly like a fraud.

What next?

4 Replies

oldestnewest
  • Did you have the blood test before or after you went GF? If after then it may be a false negative result.

    I'd recommend you see an NHS GP and ask for referral to a Gastro Dr. You could have a variety of problems which cause these problems only a specialist can help you i.e. Chron's Colitis, IBS etc. Lactose/ Dairy intolerance also mimics many of the symptoms you've described. Keep a food diary and take this with you when you see your GP. Thyroid probs & Coeliac do often go hand in hand yet it may not be Coeliac that is causing your problems e.g. Pernicious Anemia (with v low B12) is auto-immune and can cause fatigue.

    See your GP and ask for help.

  • Thanks for your reply FionaGFG.

    My NHS GP knows very well how I feel, which is why I eventually resorted to a private GP. There is no way he will refer me to a gastro and the last time I talked to him about exhaustion he advised me to do some running in place. He is the fourth GP I've seen at this surgery and so far the only one who will work with me on the Hashi's (keeping my TSH under 1) so although I don't really rate him, I'm staying with him while the levo dose is sorted out. I've asked before for a B12 test but they won't do one.

    CD blood test was taken before I went on the diet. I've been dairy-free for a number of years (I used to get congestion with dairy) so I don't think that's it, and I've recently reintroduced some dairy with no ill effects.

    Rereading my post I see I wasn't really clear about my gut problems. The gastric symptoms occurred intermittently over a period of about 10 years but I last had symptoms about two years ago, unless you count the relentless constipation I've had since I went gf.

    Ugh, I'm so confused and exhausted by it all, and the relationship I have with my GP makes it so much harder. I feel like I go there either begging for or demanding things, because if I don't I'll just go home with nothing.

    Sorry for writing a tome.

  • Hi hollyann,

    I can understand you wanting to stay with your current GP while your thyroid medication is sorted out. A GP that will keep TSH under one seems to be a rare thing indeed. I hope that when your thyroid treatment improves, your fatigue and constipation will also improve as I think both can be symptoms of being hypo.

    I know it's hard to stick to a diet without good cause. I stay GF because without it, I am constipated - the complete opposite to you - but lately my constipation has been starting to return and my resolve is waning too. However, I have heard so many people say they were able to control their Hashi's so much better by sticking to a GF diet - there are lots of things in wheat that can trigger an immune response, even if you aren't coeliac.

    Constipation in itself can be a cause of fatigue because toxins that should be eliminated can get reabsorbed as the poop is hanging around too long inside you. Have a look at the website gutsense.org... It will change the way you think about poop and how to deal with constipation. He says that constipation is a sign of gut dysbiosis and fibre dependence - most of what we poop out should be dead bacteria not fibre (even people who are fasting still poop). Maybe something there will give you ideas on how to manage the constipation.

    I would ask for that B12 test because if its low then that can make a huge difference to how you feel. Also you mentioned being anemic. Was that due to low iron, and if so, how are your iron stores (ferritin) now? Anemia is easily resolved with iron supplements but building up iron stores takes much longer. When iron stores are low, that can also contribute to fatigue.

  • Hi. Thanks for replying.

    My thyroid levels have been okay (not perfect but better) for a few months now and the endo wanted to see if my energy improved without raising my T4 (which it hasn't) so I'll see what happens with my appointment in Jan. I'm glad you understand why I'm not changing GPs at the moment. The last two were virtually hostile and though I'm not starting a fan club for this one, at least he'll work with me on my thyroid.

    I've asked for the B12 more than once and they won't do it. I was supplementing with a multi and Bs anyway because I can't see how it can do any harm, but after supplementing heavily (with the private doctor's guidance) since April, I never felt any improvement so that has fallen by the wayside a bit. My iron levels, if I remember correctly, weren't too bad last time it was checked, but I had been on Spatone sachets for a while. I know I'm very low in vit D, and I'm supplementing like mad but can only just get my levels off the ground. GP has offered injections, but I hear they're painful - ?

    Just to clarify, the diet is fine. The only thing I really miss is having beer in a pub, and I've found a restaurant in town which serves gf beer, so I can go there to be 'normal'. I *hate* negotiating the whole eating out situation (where a supposedly gf meal can come with croutons on top or some such, we've all been there) but as I don't seem to be improving on the gf diet I will now feel less worried about contamination. But if anything I'm actually feeling worse on the diet, which makes me think that perhaps I shouldn't be on it.

    Because the constipation only started when I became gf, I would say that it's not a cause of my fatigue.

    I know what you mean about the gluten/thyroid connection, which is why I have really given this a good go. I know wheat in particular is very inflammatory for many people and if nothing else, that's a good reason to avoid it.

You may also like...