Something is wrong - could I be celiac?

[CHWills]

Hello everyone! I’m so happy I found you all. I’m currently in the process of diagnosis after 30+ years of awful symptoms. I’m 42, female and live in North Wales (originally from London).

It’s such a long story that I don’t know where to begin, but I guess I need to share all the facts!

- I grew up in a half Mediterranean home and pasta was a staple

- As a toddler I had continual gut problems

- In my teens (the 90’s) I started suffering with migraines, joint pain, horrendous problems with my periods, blacking out, cystic acne, desperate thirst for sweet things (every day I’d come home from school and down milk or soda from the bottle, almost emptying it), I had something that I’d call ‘fast’ where everything around me seemed to speed up (I now know this was me having despondent episodes/seizures), I was also incredibly thin

- The docs told us nothing was wrong with me and that I was too tall for my age hence feeling so awful (I was 5’ 7”......)

- as I got older, my periods and gynae matters got much worse. I would still black out too. I developed rashes on my hands and told it was contact dermatitis (lots of small blisters). I also began to notice that when I ate wheat I felt awful. After a bowl of pasta I’d tell my mum that I felt sick, tired and sad. She’d tell me I just ate too much. I also had chest pains, which the docs said was something called chostocondritis (apols for misspelling!)

- In my 20s, and living on my own, my joint pain in my hips down to my feet began to flare once every few months. I couldn’t walk it was so bad. The docs ran blood tests saying it could be arthritis, and xrayed my joints, but it was clear. My periods continued to be horrendous, with docs telling me I just have heavy periods

- Towards the end of my 20s I had gained weight that I struggled to shift. I decided to go low carb, which meant I stopped all wheat. Over the following 6 months I lost an insane amount of weight. With it my pain, migraines, itchy skin, skin rashes, nausea, depression etc etc lifted. I felt like superwoman

- Sadly, my 10 year relationship ended and I went for the food. Pasta, pizza....you know the drill. Within a year I couldn’t walk again without sobbing. I’d come home from work, get some rice from the Chinese takeaway, eat it in bed and pass out.  My skin burned to the touch. Migraines were crucifying. Then the blacking out came back. New symptoms included arms tremors, stuttering and despondency where I would lose the ability to speak. I was terrified

- Docs told me it was fibro. I argued and said I thought they were wrong

- A year later I was diagnosed with PCOS and Adenomyosis - I had the answers to my gynae issues

- Symptoms continued - hard core

- A few years later I had sever gastro pain which had the docs worried. I had shooting pains in my gall bladder and pancreas areas. A scan showed I had a slightly fatty liver, which they couldn’t understand. By this point I had seriously cut back on wheat (but still had it 1 or 2 times a week) as I felt like something wasn’t right, so my tests for celiac came back ok. I also had a wheat allergy test which showed a very mixed positive result

- They did an endoscopy, but they didn’t go down to the small intestine - just the stomach - all was clear. I was at the point where anything, except for clear bone broth with vegetables, made me vomit. The gastro ‘specialist’ leaned back in his chair and said ‘what do you want from me? You’re fine’ another doc, after telling them I managed one banana in two days said ‘drink thin soup and take a multivitamin. You just have IBS’. I was devastated 

- I was still blacking out. I realised it had happened 3 times after a carbonara....! (I know by this point you’re all screaming ‘you shouldn’t be eating it!!!’) the worst one had me in hospital with a smashed face. Neurology gave me an EEG, sleep EEG, ECG, 24 hour ECG and brain MRI

- They said my sleep EEG had mild wiggles, not enough to worry them, everything else was clear. My brain scan showed a cluster or white marks, I asked what that was: ‘that’s nothing to worry about, just marks from where you had previous seizures I imagine’ (I am now aware of some people who are celiac with such marks on their brain MRIs). I asked if there was any way the food I was eating could be doing this ‘categorically not’ he said. They then told me I had FND (functional neurological disorder) and to ‘breath in to a brown paper bag’ if I ‘felt bad’

- I was devastated. I knew this wasn’t right

 

- Roll on last year. I’d had a hysterectomy for my gynae issues. It was believed that a lot of my symptoms were linked to my gynae issues

- Come May of last year I was in full swing lockdown mode. Baking bread, making Japanese gyoza and noodles etc I then got VERY sick

- My hands and feet were swollen, stomach in agony, sweating, swollen tongue and sore mouth, dizzy, despondent episodes, tremors, stuttering, migraines, insomnia, joint pain was insane, depression, anxiety...it was back

- At first they told me it was menopause due to my hysterectomy. I stopped them quickly as this was what I had been feeling most of my life. They ran bloods - some things were abnormal (serum IGM, serum urea and Eosinophil) but as other things weren’t, they said it was fine (thyroid OK, didn’t do celiac, B12 borderline as always. But the numbers showed my body was fighting something)

- I went to a private clinic for my menopause, they discovered I was insulin resistant due to my past PCOS.  I start treatment and went on a low GI DIET (keto made me sick). I began to improve massively. Weight dropped off me, was just generally much better. Every now and again I’d have a small flare up of symptoms, but thought I could manage that 

- Towards the end of last year they started me on HRT. I was scared that old symptoms would come back. I started to feel weird on it. At the same time we were buying a house. I started stress eating. I then got stuck in a situation where I had all my symptoms again. I was certain it was the oestrogen in the HRT. I would emotionally eat. I didn’t clock the pattern of my habits

And now I’m here. All of my symptoms back. It was so bad two weeks ago I needed a week off work. I was in agony. I started doing research and realised that my gynae issues, insulin resistance and symptoms all could come back to a gluten problem. There was a pattern I’d been blissfully ignoring. 

I have my bloods tomorrow (including coeliac). I’m also waiting on a private coeliac test to come back.

I’ve been continuing eating it as I know I need that for the tests. It’s been awful. The brain fog, tummy problems, stabbing pain where my pancreas and gallbladder are, migraines, shakes, tremors, stuttering, insomnia, itchy skin, anxiety, heart feeling like it’s beating out of my chest, vertigo, nausea, bringing up undigested food, constant fatigue, endless poos (I must go about 4-5 times a day) are raging. My last bloods in December showed abnormally low folate and borderline low B12.

Last night we had Chinese food; this morning my mouth is burning and my lips and tongue are swollen.

I wake every day miserable; just so utterly sad. My hands are always locked when I wake, especially the little fingers that seem to pop in and out of place. I need at least half an hour to move and stretch before I feel like I can stand up without yelping.

It’s also worth nothing I can’t handle milk or cream; I immediately get a bad tummy.

If you’ve got this far - thank you for reading my story. I’m desperate for a diagnosis, just something on a piece of paper that says ‘you have X’ and know it’s correct. 

If the bloods are clear I don’t know what I’ll do. When I saw the hormone doctor last year she said that she suspected I had an underlying autoimmune disease. Both my mum and dad have AD’s (not diagnose celiac, but I highly suspect my dad might be, but he’s too stubborn to have it checked and a number of his 1st cousins are celiac).

Whatever the test says, I know that gluten/wheat isn’t my friend. And irrespective of the results I know my body and it’s time to just stop. 

Thank you for reading this

Big love, Claire

[trents]

Welcome to the forum, Claire!

Please keep us posted about your celiac blood antibody test results. Realize that the doctor may also order an upper GI with biopsy to test for blunted villi in the small bowel so don't go off gluten just yet if you can hold out.

Edited May 17, 2021 by trents

[Scott Adams]

Welcome! 

It would be interesting to see your first blood test results that were supposedly “clear.” Sometimes they show elevated antibodies, but below the cut off marks for celiac disease.

Keep in mind, no matter the results, that only 1% of people have celiac disease, while ~12% have gluten sensitivity (non-celiac gluten sensitivity), and currently there is no diagnostic test available for it, but the treatment for either condition is the same—a gluten-free diet.

Please share your results, and I hope you finally recover when you’re able to go gluten-free. Many of the symptoms you’ve had are certainly consistent with gluten sensitivity and/or celiac disease. Hang in there!

[CHWills]

On 5/16/2021 at 2:44 PM, trents said:

Welcome to the forum, Claire!

Please keep us posted about your celiac blood antibody test results. Realize that the doctor may also order an upper GI with biopsy to test for blunted villi in the small bowel so don't go off what just yet if you can hold out.

Thank you for the welcome! Yes, for sure will keep you updated. Did my bloods today. Hopefully the results will be back by the end of the week :)

[CHWills]

On 5/16/2021 at 3:34 PM, Scott Adams said:

Welcome! 

It would be interesting to see your first blood test results that were supposedly “clear.” Sometimes they show elevated antibodies, but below the cut off marks for celiac disease.

Keep in mind, no matter the results, that only 1% of people have celiac disease, while ~12% have gluten sensitivity (non-celiac gluten sensitivity), and currently there is no diagnostic test available for it, but the treatment for either condition is the same—a gluten-free diet.

Please share your results, and I hope you finally recover when you’re able to go gluten-free. Many of the symptoms you’ve had are certainly consistent with gluten sensitivity and/or celiac disease. Hang in there!

Hi Scott! Thank you for the supportive words.

Here are my results are from a few years ago when I wasn't eating much gluten (they are UK results):

AntiTissue Transglutaminase IgA - 0.5U/ml (normal range 0-7)

IgA - 3.20 g/L (normal range 0.87-4.12)

I've had my bloods taken today and hope to have revised numbers at the end of this week. I just hope I've had enough gluten over the past 6 weeks to get a true reading.

Will be back soon with updates!