Coeliac anomaly : I'm 51 and was... - Gluten Free Guerr...

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Coeliac anomaly

neilmcmillan99 profile image
17 Replies

I'm 51 and was diagnosed coeliac as a baby. I followed a strict GF diet until aged 16 then stopped with no adverse symptoms. I've had a healthy BMI etc and I've never been unwell in my adult life. I received a blood test when I was 35 reporting that I did not have coeliac and was told I could have been misdiagnosed as a child. ( I doubt this as I was in hospital for months and had follow ups for 15 years). I learned when I was 48 that I've had Selective IGA deficiency since birth meaning my blood test when I was 35 could be a false negative. In the last 2 months I've had gut problems, but otherwise healthy. which a gastroenterologist is looking in to. I suppose I'm wondering about the extent of villous damage over 35 years, and if it is indeed damaged why I'm not in any way unwell except for my recent gut problems. Thoughts?

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Cooper27 profile image
Cooper27

The only way to confirm would be to do a gut biopsy.

There are some who suffer "silent coeliac" who don't get any symptoms from eating gluten at all, but who are definitely coeliac. It is also possible for coeliac to present with non-gut symptoms. I know someone who gets joint pain as their only symptom, and others who only get rashes, so consider if there are any other symptoms you've been struggling with.

neilmcmillan99 profile image
neilmcmillan99 in reply to Cooper27

I've read about silent coeliac recently. I have psoriasis which I know can be an associated symptom. I've recently had a range of blood tests Full blood count, Erythrocyte sedimentation rate (ESR), Amylase test, Bone profile, C-reactive protein (CRP) test, Liver function test, Urea and electrolyte test, all of which came back normal. I suppose the only test I should have is an endoscopic biopsy?

Cooper27 profile image
Cooper27 in reply to neilmcmillan99

Yes, I'd say so. As you say, IGA deficiency means the antibody test could have given a false negative. The only way for you to confirm Coeliac disease then, is a biopsy.

Is it possible your psoriasis could actually be dermatitis hepetiformis? They could also do a biopsy on the rash to check for that.

neilmcmillan99 profile image
neilmcmillan99 in reply to Cooper27

I've never had a biopsy carried out on my skin. The doc diagnosed it as psoriasis, I have it in my fingernails which is also classic psoriasis. Also the lesions are dry and have never blistered or weeped. However the onset of my psoriasis would be around when I was aged 16 or so which is when I stopped eating gluten free.

Cooper27 profile image
Cooper27 in reply to neilmcmillan99

I get a very similar sounding dermatitis in my shins every time I eat gluten, but no other symptoms. I haven't been tested for Coeliac yet, I planned to when Covid was under control again.

You can always try cutting out gluten again, see if it helps. My skin cleared up about 2 or 3 months after I removed gluten from my diet again.

neilmcmillan99 profile image
neilmcmillan99 in reply to Cooper27

I've decided to go gluten free again 4 days ago. My stomach has been upside down since, but I know it can get worse before it gets better.

Cooper27 profile image
Cooper27 in reply to neilmcmillan99

Oddly enough, I had no digestive issues before I cut gluten out the first time (my partner was diagnosed Coeliac, and I went GF to help me wrap my head around it), but within 72 hours of stopping gluten, my digestive system was terrible. It sounds like we have very similar problems!

At the very least, I know it means I'm intolerant, if that helps you!

Alybubbles profile image
Alybubbles in reply to Cooper27

I have terrible itchy rash on my shins for well over a year. Doctor told me it was Lichen Planus, gave me some Dermovate cream. Doesn’t work I’m sure the rash has something to do with my gf intolerance

Cooper27 profile image
Cooper27 in reply to Alybubbles

I think I suffered through my rash for about 4 years. I went to the doctor about 2 years in, but I definitely had a pre-formed idea of how it started and what was needed to get rid of it, which didn't help.

Apparently nutritionists notice gluten intolerance is more likely to present through the skin than as IBS, so there is a definite link. After you remove gluten from the diet, it takes a few months for the skin to improve, and you might get flares for up to 6 months.

What I found interesting was when I stopped gluten, you could see a visible line across my nails, showing the point that I'd stopped eating gluten, and the healthier nail growth behind it.

Hi neilmcmillan99 this is interesting as many coeliac have issues as children but they appear to disappear in their teens due to the hormonal changes and teens can be much less sensitive to gluten but it’s still lurking and usually something triggers it again. I used to get physically sick as a child and was scared of lots of food and was sent to a psychiatrist who said I dint need to see a psychiatrist.

In my late 20’s it all kicked off again but because I’m so healthy it took years for a diagnosis.

Since going GF my villi recovered and I have a healthy lifestyle but the gluten also attacked my colon so I have microscopic colitis which I also keep under control with diet, I’m teetotal and avoid all astringents.

So my thoughts are to eat as healthy and balanced a diet as possible combined with adequate exercise and happy days.

Good luck to you as coeliac manifests itself in many ways.

neilmcmillan99 profile image
neilmcmillan99 in reply to

Hi Jerry, That's interesting as all of this started in Nov 2019 when I had blood in bowel movements. I had a sigmoidoscopy in March 2020 and they identified inflammation of the mucosa and took some small biopsies. They said the tests showed nothing sinister and this was within the normal range. 12 months later in Nov 2020 I had left flank pain and a really noisy, crampy stomach but normal bowel movements. I had an ultrasound which showed everything as normal. The stomach problems came and went over the weeks but generally settled although the left flank pain remained on and off. Since starting the GF diet 5 days ago now my stomach has been noisy, bloated with cramps pretty constantly and the left flank pain is constant. I'm wondering whether I've damaged my villous and / or kidney by not adhering to a GF diet for the last 35 years.

in reply to neilmcmillan99

Interestingly it was blood in my stools that I was diagnosed with microscopic colitis. Your gut could be adjusting to a gf diet as it takes time for your villi to recover and what causes issues for many coeliac is they have temporary lactose intolerance as lactate the enzyme that breaks gluten down in our guts is produced at the tips of our villi.

You could well benefit from keeping a food diary and introducing new foods gradually so you can monitor their effects, the most important thing when doing an elimination diet is to ensure that you have a nutritious and balanced diet.

There is also a genetic test as to develop coeliac we usually have one of two genetic markers. HLA DQ 25 or HLA DQ2, having these genes only means that someone is susceptible to developing coeliac disease.

I think it’s only natural to worry but what’s important is to find what works for you diet wise and I’d opt for as wholesome and nutritious diet as possible which’s what I do, as I literally eat myself healthy and against the odds I’ve been healthy enough to be a blood donor so you can do it too.

And again good luck.

neilmcmillan99 profile image
neilmcmillan99 in reply to

Thanks Jerry, I tend to eat health. I get my 5 portions of fruit / veg daily, min 1.5 litres of water. No junk food, plenty nuts, seeds and legumes, and mostly poultry and fish. I rarely drink alcohol, I don't drink fizzy drinks and generally have a clean diet. My guilty pleasure has probably been chicken Selects from McDonald's now and then, and very occasionally sweets and ice cream. I usually go to gym 3 times weekly minimum although that's been impossible due to COVID. I was running regularly during first lockdown but the weather has killed that this time around. I'm keeping a food diary on my fitness pal app. Maybe just some more tests for a process of elimination.

blowinginthewind profile image
blowinginthewind in reply to neilmcmillan99

Not exactly sure where you are describing as left flank, but uf ut the area on the left hand side of your body below the rib cage and above your hip area, then this could be something to do with your spleen. It is important to ask doctors to check this out for you. Even if it is less bad than it was. And also, have them check your full blood count. Mine were unusual but the doctors said that it was due to the serious bone infection I had - unrelated to coeliac disease. One haematologist put a query by the results about me possibly being in the very very early stages of a blood disease. All the other doctors said that it was the bone infection. 6 weeks after removal of bone infection - it was in a finger so we removed it - the blood results were the same. I I have a blood disorder, and an enlarged spleen. .

neilmcmillan99 profile image
neilmcmillan99 in reply to blowinginthewind

Yes by left flank I mean te area you describe. I have had an ultrasound and Report reads, "Normal ultrasound appearance of the liver, gallbladder & binary tree. CBD measures 0.cm. The head & body of the pancreas appears normal; tail is obscured.Spleen is normal in size.

Normal right kidney. The left kidney appears unremarkable asides a 1.1cm thin walled cyst which contains a 0.4cm area of calcification within I'ts wall. This should be followed up by an ultrasound initially in 3 months time.Normal calibre abdominal aorta.The urinary bladder outlines normally, prostate measures 3.6 x 5.4 x 3.4 cm. No abdominal free fluid."

So all seems normal other than small kidney cyst which they said should not be posing any problems. I also had the following blood tests;

Full blood count

Erythrocyte sedimentation rate

Amylase test

Bone profile

C-reactive protein

Liver function test

Urea and electrolyte test

All of these came back normal, in fact the doc said some of them were in the excellent range.

blowinginthewind profile image
blowinginthewind in reply to neilmcmillan99

That sounds positive then. My spleen is enlarged but not really working well. I have scan's every few months and blood tests every few weeks. But thankfully, no chemo yet.

eliz45 profile image
eliz45

One thing that surely indicates if you have had severe villous damage is if you have continually gained appropriate weight. Basically I think that if the villi are seriously damaged you can't absorb nutrients and you start losing weight. I think there are tons of things that are unknown about celiac and the doctors are just trying to figure things out with what info they have. And there are many patients who have very different symptoms than are usually discussed when talking about celiac.

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