Almost hoping it's celiac!

[Banana]

Hi everyone.  I'm in the UK.  Currently experiencing gastro problems.  I'm 68 and this is pretty much the first time in my life that my gut has caused me any trouble.  I guess it all started about a year ago when my bowel movements changed & stayed changed.  Smaller, somewhat paler & they float (I think I'm getting used to talking about these things in detail quite quickly!). Over time I started to dread getting out of bed because I'd wake up feeling hungry & grab some muesli for breakfast ... and that was when it would all start: breakfast and then going to the toilet just knocked the stuffing out of me for an hour or more.  About 2 months ago I got severe abdominal pain & generalised weakness / lousy feeling all over.  That went on for about 5 weeks during which I went to see a GP.  Astonishingly (for our area) there actually WAS a GP available and she was calm, considered, thorough and has been proactive in trying to get to the bottom of this.  However the NHS does work a little slowly so no answers as yet.

The severe pain has subsided.  However I am still very debilitated, still have slight pain in abdomen most of the time (though not at night fortunately).  I have psoriatic arthritis (it is autoimmune) and while it has disabled me in the past, Methotrexate and then the 'new' biologic drugs (and maybe luck) have helped considerably for many years now.  I'm fairly strong and active by inclination though of course not so much recently.

One of the reasons I'm posting here is because I do have some kind of aversion to wheat & oats ... tasty as that homemade muesli was, I now flinch at the thought of it.  Same with the lovely fresh sourdough bread I used to buy. Obviously(?) I am aware of gluten intolerance and have been checking out coeliac disease but shying aware from wheat or products likely to be 'contaminated' with wheat has been visceral, feels almost instinctive.  

I am used to to struggling to get through some days, most people with autoimmune diseases would say that I think.  But this is particularly horrible - I sometimes feel too weak & weird to speak.  I have a telephone appointment with a GI specialist in 2 days time.  And a gynaecological scan in 5 days.  Is there anything any of you would suggest asking the GI doctor?  Oh, and I have had blood and stool samples tested - all were fine apart from my usual high cholesterol.  But I don't know what the blood test checked for, I will ask about that.

Apologies if I've missed any key things, I'm just reaching out ... information gathering etc.

 

  

 

 

[trents]

There are specific blood tests to check for celiac disease (aka, gluten intolerance) and your symptoms scream of that. You must have been eating generous amounts of gluten (the equivalent of 4-6 slices of bread) for at least two weeks for the testing to be valid, however. I would be concerned that since you have been cutting back on your wheat consumption of late your testing might not be accurate.

If you do go for antibody blood testing, ask for: total IGA, TTG-IGA, DGP-IGA and DGP-IGG. 

[Banana]

Thank for your reply, it helped concentrate my thoughts.  Playing a tricky game here as despite my advanced age I'm due to start a post grad. course at beginning of October.  Fortunately quite close to home & just 2 days a week attendance required but obviously  I fear spending first few weeks in pain etc.  But totally get what you're saying so will jump off the wagon tomorrow.   NHS wheels turn slowly as I mentioned, so assuming specialist orders Coeliac tests I can factor in the waiting time.  And anyway, I will really press for the test if somehow he doesn't think it's required.

[Wheatwacked]

Welcome to the forum @Banana

 

12 hours ago, Banana said:

Hi everyone.  I'm in the UK.  Currently experiencing gastro problems.  I'm 68 and this is pretty much the first time in my life that my gut has caused me any trouble.

I was 63 when I started GFD and had been mostly stuck in bed since around 2012.  My symptoms were blamed on 30 years of alcohoiism.  Funny thing; after only 3 days of GFD, I stopped drinking and did not miss it.

Another test is antigliadin G.  It may be posistive even if the other tests are negative.

I was 63 when the acute version hit me 10 years ago.  No one mentioned the malabsorption causing malnutrition even though I was eating a "healthy diet"

As I understand it after 10 years is that the immune system becomes compromised (low vitamin D) Some attack on your system, could be as simple as a cold, gets those T and B cells running amuck, without enough D to keep them in check.

Add to that malabsorption caused by the damage to your small intestine villi, where most vitamins and minerals are absorbed, and the deficiencies caused by changes in your diet and the deficiencies inherent in our "western diet".  Each deficiency adds to your system with the symptoms each causes.  For example, low choline could be the cause of your bowel problems.  It is essential for digestion of fat.  Symtons ofter associated with gallbladder disease.  In fact choline is a large part of bile.

Nutrition tests I suggest because the are common but rarely looked for:

vitamin D 25(OH)D Serum Level

Thiamine deficiency B1

choline

Urinary Iodine Concentration   

B2, B3, B5, B12

Folate (B9)

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 "Serum T4 and T3 are even less specific indicators of iodine deficiency because they are modified usually only in conditions of severe iodine deficiency and are not recommended in routine assessment and monitoring... The findings of the UK survey have major public health importance as the UK is now number eight on the list of the top 10 iodine-deficient countries (based on national median UI less than 100 μg/l in children)   Thyroid and iodine nutritional status: a UK perspective

 

 

Here is the list I took.  I've been able to cut most back and get them from my diet now.  Iodine was the last added, in September 2023 and because of the scary stuff they say about it.  Vitamin D - 10,000 IU a day, Thiamine - 250 mg 1 to three times a day, Choline - I used to take phosphotidyl choline capsules but now I eat lots of eggs and beef.   Iodine - 500- 1500 mcg of Liquid Iodine,  These are the ones that had the most obvious improvements for me and I rarely skip them.

Additional likely deficiencies and what I took/continue to take to boost my intake (I get anorexic at the drop of a hat, so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 650 mcg a day, Thiamine, Choline, and Iodine.

10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.

Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?

Iodine – 1000 mcg of Liquid Iodine once or twice a day. United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.

Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals

500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle

1000 mcg B12 - creates hemoglobin for oxygen transport

500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).

I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.

Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.

Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

[Banana]

Hi Wheatwacked.  I take on board what you say about diet and supplements too.  I think I was malnourished as a child, not so much as an adult though.  But I did get Psoriatic Arthritis which is autoimmune in my 50s.  These days my diet is pretty good I think - tons of vegetables, beans and pulses, fair amount of dairy including milk & plain yogurt, some fish, little meat and very few processed foods.  I can see that I may be somewhat deficient in Vitamin D because of a) living in the UK and b) needing to avoid much exposure to the sun due to the drugs I take for PsA.   Additionally it does seem that autoimmune diseases love company.  Most people I know with PsA have at least one other autoimmune thing going on.  I had severe onset of PsA, some doctors thought I'd be permanently disabled by it, but fortunately the drugs and, possibly, my lifestyle seem to have quietened it down considerably.  So all in all I'd say that if I do have coeliac it shouldn't be too difficult for me to manage with diet etc.  

I've been gluten free for 2 days, which I realise is nothing ... yet today is the first day in 6 weeks or so that I've been clear-headed and stayed awake!  (This might also explain my current positive tone!)  So maybe not coeliac, maybe 'just'(?) gluten intolerance.  It's a shame that I'd need to re-introduce gluten well before a diagnostic blood test - which probably means tomorrow - but hey.

[Wheatwacked]

Whether Celiac Disease or gluten intolerance (in the US it is an official diagnosis of Non Celiac Gluten Sensitivity) if you go back to eating wheat it will come back.  You already know how much 3 days helps, imagine a lifetime of improvement.  Gluten is addictive.  It affects the opiod receptors.  But you do need at least 4 slices of bread or the equivalent a day until testing is complete.  They are looking for antibodies and damage to your small intestine.  Take gluten away the damage stops, and it is easy to miss.

Please read this article from Mayo Clinic Proceedings.  I have personally been taking 10,000 IU a day since March 2015.  When I take it my blood level stays around 80 ng/m (200 nmol/L), when I don't it drops fast.  In the spring my blood was 93 ng/ml so I stopped taking it.  In July even with the summer sun it had dropped to 74 ng/ml.  I get blood tests 4 times a year.  In a week of 10,000 a day back in 2015 (Gluten free in November 2014) I started to feel remarkly better.  But the blood level goes up slowly.  In 2019 mine was at 47 ng/ml, two more years to get to 80 ng/ml (200 nmol/L. The UK passed laws against vitamin D and got most of the world to follow, in response to a manufacturing error in baby formula in early 1950's that caused an epidemic of infant deaths.  I have noticed that the studies that fail to show improvement use 30 ng/ml (75 nmol/L) as a safe cutoff point and usually low doses or short times periods of vitamin D. It seems that is mandated by ethics rulings imposed by government, not medical research.

The other deficiencies will get better on GFD.  There are reports that lactobacillus (from fermented pickles and bifidobacteria from yogurt are helpful, but vitamin D will not improve unless you take enough orally.

Interesting that the drugs to control your PsA forces you to avoid the sunshine vitamin D you need most for recovery.

Vitamin D Is Not as Toxic as Was Once Thought:  A Historical and an Up-to-Date Perspective Mayo Clinic Procedings

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Although the Royal Academy of Physicians admitted that it did not have any direct evidence for this conclusion...Vitamin D intoxication associated with hypercalcemia, hyperphosphatemia, and sup pressed parathyroid hormone level is typically seen in patients who are receiving massive doses of vitamin D in the range of 50,000 to 1 million IU/d for several months to years. Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL.

Surge of information on benefits of vitamin D 

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  • McCarthy has been employing these methods since February 2007, and patient acceptance has been high. He said he checks each patient’s 25(OH)D level and supplements to reach a target of 80 ng/mL ... 
  • A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
  • Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
  • Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;

   

  The role of vitamin D in autoimmune diseases

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  In line with these observations, patients with RA show basal serum levels of 25(OH)D lower than healthy controls, and a negative correlation between serum 25(OH)D and RA disease activity was revealed by multiple studies [14, 108, 109]. Notably, vitamin D deficiency also appears as an environmental risk factor for RA [14]. Different studies exploring the association between ultraviolet light exposure and RA risk showed a lower RA risk associated with higher UV-B exposure [110, 111]. In the same vein, vitamin D intake was inversely correlated with the risk of developing RA, at least in postmenopausal women [112]. Furthermore, genetic polymorphisms of VDR (e.g., FokI, TaqI), which may affect vitamin D function, seem to represent additional risk factors in the onset of the disease [19].

  Is vitamin D status relevant to psoriasis and psoriatic arthritis? A retrospective cross-sectional study

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there was an inverse correlation between 25(OH)D levels and disease severity (PASI). 

Edited Sunday at 05:01 AM by Wheatwacked
typo

[trents]

Wheatwacked, my definite impression is that NCGS is commonly referred to as gluten sensitivity (hence the word "sensitivity" in the acronym) whereas gluten intolerance is generally used as a synonym for celiac disease. But it is true, there is some inconsistency in the literature in terminology usage.

[Banana]

Hi Wheatwacked.  A lot to think about for sure.  But, for now, just re. Vitamin D.  I guess there are complexities and contradictions to wade through with any condition / medication.  When I was getting diagnosed with PsA, one poor fellow patient who could barely walk was told that she either had inflammatory arthritis or, possibly, was suffering the effects of exceedingly low Vitamin D.  I guess a long period of trial & error ensued for her.  So yes, I have some idea of the potential impact of low Vitamin D and apparently at least some doctors do too.  But then, once I was diagnosed, I was told to be careful about sun exposure because both Methotrexate and Adalimumab cause photo-sensitivity which can pre-dispose to skin cancer.  And I have had one 'pre-cancerous' lesion removed from my face.

A few years back my Vitamin D levels were found to be particularly low and my GP recommended supplementation.  That was fine until I lost sensation in my lower spine (mobility wasn't compromised).  I was then instructed to stop taking Vitamin D because it can cause pressure on the Cauda Equina nerves which could, potentially, paralyse me from the waist down.  However I take on board the information in your first link, it may well have been the case that telling a patient to stop taking a supplement is a whole lot easier than testing etc. to confirm if that is justified.  But, anyway, I currently hedge my bets.  We do get a bit of sun here lol.  And I live in the relatively sunny South East.  And I love being outdoors.  I avoid burning but face, arm & lower legs do go a darker shade of pale in the summer.  However you have reminded & encouraged me to get my Vitamin D levels tested again and to have another go at supplementation, though hopefully with some support from a doctor.  I know that Vitamin D is incredibly important for, I guess, the whole body & the mind, but medical practice does not seem to have taken that on board.

[Banana]

And yes, I am stuffing my face with toast.  Next stop: cake.  

[Wheatwacked]

Ask about your prescriptions.  Some of your symptoms are possible side effects of the drugs.  Several BP meds crippled me, I take Clonidine now.  Metformin and other diabetes meds turned me zombie like after 3 months on them.  They all comprimise the immune system and that is why vitamin D is so important.

The impact of methotrexate therapy with vitamin D supplementation on the cardiovascular risk factors among patients with psoriasis; a prospective randomized comparative study  Adding vitamin D supplementation to methotrexate may protect lipid homeostasis, specifically cholesterol and triglycerides.

Vitamin D May Be Connected with Health-Related Quality of Life in Psoriasis Patients Treated with Biologics Instead, in our groups of patients treated with biologics, a higher serum concentration of vitamin D seems to be associated with a better outcome of psoriasis.

 

For the joint and muscle pain (fibromyalgia) I've been on Prednisolone for 12 years, saved my life.  At first it took 30+ mg a day just to be out of bed.  After I started  GFD two years later I am able to maintenance on between 5-15 mg a day depending on activity.  Most important: pain free and no side effects for years now.

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Most common adverse reactions associated with TREMFYA are: • Plaque Psoriasis and Psoriatic Arthritis (≥1%): upper respiratory infections, headache, injection site reactions, arthralgia, bronchitis, diarrhea, gastroenteritis, tinea infections, and herpes simplex infections. (6.1) • Ulcerative Colitis • Induction (≥2%): respiratory tract infections. (6.1) • Maintenance (≥3%): injection site reactions, arthralgia, and upper respiratory tract infection. (6.1)  TREMFYA® (guselkumab)

 

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Methotrexate can sometimes cause side effects, which may include:

• feeling sick, headaches, vomiting, diarrhoea, shortness of breath,mouth ulcers, minor hair loss and hair thinning, rashes.
• If you're concerned by any side effects, contact a health professional for advice.  Methotrexate: Side effects and risks

 

 

[Wheatwacked]

Eat Right for Your Spine When your vitamin D levels are restored through supplementation, your pain may significantly decrease. Before taking vitamin D supplements for your lower back pain, talk with your doctor about possible side effects and proper dosage.