In desperate need of help - symptoms baffling everybody.

I am new here and looking for help and answers. Thanks in advance for any help you can give. I’ve not been diagnosed with coeliac but I do wonder if it's the cause of all my issues. I have myriad life altering symptoms and I'm desperately trying to get to my root cause. I’ve been really quite sick since I was a teenager, when chronic fatigue and depression set in. I am 41 now and have a number of illnesses, most of them autoimmune:

•Hashimoto's hypothyroidism

•Psoriasis

•Likely autoimmune atrophic gastritis (under investigation)

•Pernicious anaemia (low B12)

•Rapid cycling type 1 bipolar disorder with psychosis that hasn't responded to treatment with over 20 different psychiatric drugs

•Migraine (three a week)

•Chronic fatigue syndrome

•Hypertension

•Fatty liver

•Metabolic syndrome

•Familial hypercholesterolemia

•Obesity

•Investigated for coeliac 3 times but not detected however my gastro did observe that my gut was hugely distended and that my stomach sat forward.

I have many other symptoms as yet unattributed:

•Rash on eyebrows and cheeks, although it is mostly down the sides of my nose and not under my eyes

•Circular rash on chest

•Flaky rash on scalp

•Poor balance

•Poor positional awareness

•Clumsiness

•Weakness and muscle loss

•Foggy thinking

•Very poor memory

•Confusion (sometimes debilitating)

•Occasional panting / shortness of breath

•Anxiety and paranoia

•Persecution complex

•Restless legs

•Tachycardia and palpitations

•Sleep disturbances

•Debilitating intermittent ankle pain

•Aches in every joint and muscle

•Muscle stiffness

•Mouth ulcers

•Dry eyes

•Cold extremities

•Poor circulation

•Pins and needles

•Pain in calf muscles when walking more than 200 yards

•Total hair loss on lower legs

•Constipation / diarrhoea

•Blood in stools

•Pale complexion

•Moon face

While there are a lot of conditions and symptoms it's the neuropsychiatric issues that have become completely debilitating, to the extent that I've been admitted to a psychiatric hospital 5 times and have not responded to any of the 20 different psychiatric drugs that I've been prescribed. I had to work part time for 4 years until a year ago when I was forced to stop work entirely. I've always been sick since childhood but in the last 5 years it has become unbearable and has cost me everything.

The strange thing is there were periods when every symptom has gone into complete remission simultaneously. Looking back this coincides completely with when I go on a low carb diet to lose weight, which I've done five times (the first for weight loss the next 4 to feel well). The same happened again when I went on FODMAP diagnostic diet to try and work out what was causing my gut issues after being told I didn't have coeliac following a negative gut biopsy.

In January I started the Autoimmune Protocol diet to try and control the antibodies that had caused Hashimoto's and yet again every symptom disappeared within ten days! I'm currently in complete remission and feeling better than I have in 10 years - I've even gone back to work and my psychiatrist has said she will soon reverse my bipolar diagnosis. The only genuine commonality between the periods on a weight loss diet, FODMAP and the Autoimmune Protocol diet is that all of them are 100% gluten free.

I am well enough to actually start researching what's wrong with me (when sick I can't read) and I am trying to establish if the above symptoms could be attributable to coeliac disease. I've read through a number of medical research papers that show that there is a link but these are rare so I would welcome some insight if anyone has experienced similar.

I'd love to hear from you. Are there any tests I can ask for (DNA profiling for example)? I had a positive ANA screen (speckled pattern) but this tested negative a week ago since starting the diet and the FODMAP diet result indicated 'wheat sensitivity' diagnosis but nothing more. Due to the severity of my symptoms I will never again eat gluten so any blood test or biopsy will be negative. My doctors are sadly quite clueless.

12 Replies

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  • Wow what a nightmare of a journey you have been on!

    If all your symptoms clear up when you are not on gluten, then in my humble opinion, since it is not coeliacs, it is probably non coeliac gluten sensitivity, I am amazed none of your doctors have considered that.

    One really good place you can look for more info is the trulyglutenfree.co.uk website & purehealthclinic.co.uk which are both run by Micki Rose. Loads of info on there & you can have access to tests & very importantly there is a healing your gut plan on there. Micki herself is amazing & a fountain of knowledge. I would suggest contacting her & she will advise about the next steps to take & which tests if any are worth doing, bearing in mind you seem to have found the cause of your issues, in any event, she will point you on the right path to start healing & re balancing your body in a practical way. There are also linked closed facebook groups linked to her site which offer great support & I am always blown away by the delth of knowledge those members have.

    In the meantime, you have made a huge step forward already, so let's hope by continuing your gluten free diet you make more progress & at least you can see the wood for the trees now & start your journey back to health.

    Good luck

  • If it's just gluten allergic like the diagnosis they set me up with on the NHS your stuffed mate in the uk because you get treated like shit your not entitled to get free gluten free prescriptions you will have no protection if your in hospital or prison basically you will have no rights no access to gluten free so you could probably die in the future I have a lot of the same symptoms as you and know how you feel. Basically I think they fail to diagnose coeliac on purpose a lot of the time in the NHS and give out the gluten allergic diagnosis to save money.

  • You have such a complex set of symptoms it must be very difficult for you. I presume you have different health specialists involved? Do they ever get together for a conference on your case? Or do they communicate with each other? Maybe your GP could help to discover about this possibility. I also wondered if any of your medications might be giving you some of the symptoms you are experiencing. I hope you get some help because you really have a lot to deal with. Good luck!

  • It seems you have come across a few diets that help to improve your situation. I think the key aspect that links them is the reduction of complex carbohydrates and grains, particularly gluten containing grains. I would suggest you research the Specific Carbohydrate Diet (SCD) and the book Breaking the Vicious Cycle by Elaine Gottschaal. It has been used by many people to successfully treat many autoimmune conditions including Hashimoto's, and I can heartily recommend it from personal experience. Good luck.

  • Hi Nunezhall, you poor thing, you have had such an awful time! And clearly despite such awful health issues you have been doing your best to get to the bottom of it. One of my Dad's friends had a relative who had endoscopic biopsies for TEN years before getting diagnosed as coeliac, so it can be a very long and frustrating process, and can be negative even when you have it. Hopefully tests will come along soon that will be more sensitive and don't require gluten ingestion to prove coeliac disease- there is a test in development based on the T cell response. You can also have an indirect test done, as the vast majority of coeliacs have the HLA-DQ2 variant (a small number have HLA-DQ8 but pretty much everyone has one or the other). It doesn't 'prove' you have coeliac disease, but it tells you you have the potential to develop it, and if you already have symptoms, then it's likely that's what's causing it. My blood test for IgA-TTG was negative but like you I have mostly been gluten 'lite' for quite a while, and I've been told the waiting list for endoscopy if very long, and I'm not optimistic about it being positive given the story I mentioned, plus I have now gone strictly gluten free and don't plan to reintroduce even before the endoscopy because I feel so bad when I eat gluten. I am planning sometime to get the genetic test done privately just so I have a bit more evidence but at the moment I am happy that symptomatic improvement is enough to convince me of the need to stay gluten free. It's something you could consider as there's not much else you can do to help diagnose it. If I were you, given the severity of your illnesses and how long you have suffered, I would just stay strictly gluten free and not worry about an 'official' diagnosis- I can almost guarantee you will suffer at least months of setbacks and poor health, and a gluten challenge is just going to do more damage to your poor gut- I would just start letting it heal. If better tests come along that don't require gluten exposure, you can get them done when they're available. As you already have other health conditions, they should be followed up anyway, so your care should be good, which is really the only purported benefit of being officially diagnosed (aside from the prescription gluten free food, which I imagine will some day get cut by the care commissioning groups anyway). Make sure your primary care doctor notes improvement in your symptoms as you remain gluten free. My GP did this for me- documented how bad I got during a gluten challenge and how much better I felt a few weeks into gluten free. All the very best, do report back how you are getting on!

  • Hi Nunezhall, I saw your post on FB and suggested you come here, I would also suggest joining and posting this on the Ataxia group.

    There are lots of links here to a gluten sensitivity and this is supported by you improving when you go gluten free. I'm guessing that no-one you've seen has much experience with gluten illnesses other than coeliac disease, but to be honest there are many conditions affected by gluten and coeliac disease is just the only one that's been recognised and many would say that a positive biopsy (showing enteropathy) is later stage disease. There are other ways of diagnosing a gluten sensitivity but you need to see a doctor who knows this and they are few and far between!

    I've mentioned ataxia because you have mentioned balance issues - ataxia is damage to the cerebellum (area in the brain) and can be caused by gluten antibodies and is then called gluten ataxia - its an autoimmune cause of ataxia. I have this and almost completely recovered since going gluten free. This would account for the balance issues you have, likely also explain the migraine and hypothyroid as these have strong links with gluten issues. The memory problems are also a symptom of this, though its supposed to actually be concentration and not memory, though it feels like memory problems! I could add many of your list to my list of symptoms!

    Prof Marios Hadjivassiliou is the doc to get a referral to, dont put this off even if you have to travel, he is the one to sort you out if its gluten ataxia but even if its not (pretty sure it will be this from all your symptoms and that it resolves with gluten free) he will do the appropriate tests.

    I had a similar story and eventually figured that gluten was behind it - my doctor just wanted to explain it as depression, which I wasnt, even foot pain was explained as being because I was depressed - I had peripheral neuropathy caused by the gluten antibodies. I also had an underactive thyroid, which has now returned to nearly normal (Prof Marios explained this as thyroid tissue being attacked by the gluten antibodies and said it would likely improve), migraines which I no longer have and so on!

    Im more comfortable posting my experiences here than on FB which is a bit open for personal disclosures.

    You don't need to eat gluten to test for antibodies as they are likely to remain for months if not years, mine have never returned to normal, but there is also the genetic test and a newer test (Ttg) and other ways of testing.

    GP appointment methinks, I got to feeling like I couldn't face going but just had to gird my loins and brave it and got there eventually though it was me saying I think its this, or that and her thinking I was just depressed and probably thought I was loopy!

    Gill

  • Like Gill i have gluten ataxia or at least this seems the most likely explanation. I was diagnosed with coeliac disease in Dec within 3 weeks of stopping gluten i was depression free. This had plagued me since i was in my early teens. I have been suicidal at times. I had unexplained foot pain that kept me awake that resolved. I have terrible balance issues and leg weakness the weakness is improving though not the balance not yet but it's early days. I found the YouTube the truth about gluten and also YouTubes by prof Marios and Alessio Fasano very educating. I hope to be referred to Sheffield my neurologist is still testing me. He picked up the coeliac disease i did not have any of the normal symptoms so i will be eternally grateful to him for that,and his diligence in still investigating. I hope you can get some respite from your symptoms.

  • Nunezhall, you have 'leaky gut' and the best course would be for you to look for a qualified Integrative / Functional medicine specialist near you, who can view all your symptoms in an integrated manner and get to the root cause. Non celiac gluten sensitivity is a thing and your biopsy is going to be negative. You can definitely recover. The AIP diet is one part of the total picture, albeit a very important one. In addition, you need hormone balancing, detox and lifestyle changes, including mind body balance.

  • Hi just picking up on a few points:

    You have

    Hashimoto's Autoimmune Thyroiditis & Hypothyroidism . May I ask what dose Levothyroxine you are on for that? ALSO what are your most recent blood tests results? If your Thyroid medication is not doing it's job then no part of your body will work properly. EVERY CELL IN THE BODY NEEDS THYROXINE TO FUNCTION. Do you feel worse after a cold or other infection?

    2nd

    You mentioned 'moon face' are you, may I ask on high dose steroids long term for any of your conditions?

    3rd

    Constipation, Diarreha, blood in stools - ask GP for urgent referal to Colorectal Specialist. Are you able to drink lots of water and eat plenty of fresh fruit? Avoid caffeine, bread, cheese. Are you able to take Lactulose Medicine and Fybogels. Adding a little fresh orange juice to Fybogel stops them from going thick before you can drink them

    ABOUT YOUR HASHIMOTO'S & HYPOTHYROIDISM if you manage to get copies of your last blood tests (with the 'normal ranges' in brackets) post them on the Thyroid forum to get checked out. Some supplements and medications can compromise Levothyroxine. There are experts on Thyroid forum who can help with this.

    ps do you take codeine or cocodamol for pain?

    pps the hair on my legs started to grow back after a year or so on the correct dose of Levothyroxine.

    It seems to me that many of your symptoms sound Hashi's /Hypo related. If you haven't had blood teats recently then please ask for them and get written copy of results. Ask for TSH and Ft4 and t3 . You could also post your LFTs results if you wish.

    Hope this helps a little.

    X

    🐥

  • Crikey what an array of symptoms. I wouldn't think one 'thing' is going to solve the lot, but along with the advice here about thyroid etc - which I'm not going to add to, you could give your mental health a real helping hand by trying a Dopamine diet. It's essentially low carb/no gluten but seems to also provide the good brain chemicals (via food) that you may be in desperate need of. Tom Kerridge, the chef, lost all his weight doing this too.

  • I'm following the autoimmune protocol which is a diagnostic, nutrient dense, whole food diet based on paleo. It's not too disimilar to the dopamine diet but is slightly more restrictive. There is some indication that my dopamine was low as I have had restless leg syndrome which has gone since starting the diet. I've lost 4 stone and about 60 symptoms since starting.

  • what a lot of problems you have. I do hope you get some answers to your problems.

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