Need some help

[Kojacs mum]

Hi my name is Jane. I have a bit of a long story so please bear with me. 

Bit of info before I start, im arthritic prescribed methotraxate an immumosuppressant, i also have a long history of depression and anxiety. My anxiety has recently become much worse and its never been a predominant feature with me. Ive also lost a lot of weight recentlynwithout trying  over a period of about 6 mnths I would say.

Anyway, over the past year or so Ive had unexplained gastric problems. Severe bloating, runny poo can never remember how to spell that the proper way. I looked pregnant i was that bloated. Was told i had IBS although none of the meds did anything to help. Im also ptone to pick, if im honest with myself, to excess and recently after a lot of stress i picked to excess.  I ended up with a lump by my ear that i though was an infection in my ear. Treatment didnt help. So on I went picking and evetuallynpicked atbthe lump and dry skinbstarted coming off my body rapidly which made me feel so.ill i thought i was having a heart attack. Noone in the medical profession would beleive me and put it down to my mental state. Now, I knew there was something not right physically going on. Then i started burping solidly for the past 24. And I feel so much better and my tummy is no.longer bloated. I decided to look up online to try and find out what the hell was wrong with me as no one would believe me or entertain it was anything physically. Sad reality of having a mental health disorder, some GPs see that and nothing else. Im not being a hyperchondriac. I came across cealiac disease and a lot of the symtoms fitted my experience. I eat a lot of bread and pasta. Which Im going to cut out of my diet to see if it helps. 

I justbwant to know if its difficult to diagnose and if any of my experience rings bells with anyone. The hardest part is no one believing me. 

 

 

[Kojacs mum]

4 minutes ago, Kojacs mum said:

Hi my name is Jane. I have a bit of a long story so please bear with me. 

Bit of info before I start, im arthritic prescribed methotraxate an immumosuppressant, i also have a long history of depression and anxiety. My anxiety has recently become much worse and its never been a predominant feature with me. Ive also lost a lot of weight recentlynwithout trying  over a period of about 6 mnths I would say.

Anyway, over the past year or so Ive had unexplained gastric problems. Severe bloating, runny poo can never remember how to spell that the proper way. I looked pregnant i was that bloated. Was told i had IBS although none of the meds did anything to help. Im also ptone to pick, if im honest with myself, to excess and recently after a lot of stress i picked to excess.  I ended up with a lump by my ear that i though was an infection in my ear. Treatment didnt help. So on I went picking and evetuallynpicked atbthe lump and dry skinbstarted coming off my body rapidly which made me feel so.ill i thought i was having a heart attack. Noone in the medical profession would beleive me and put it down to my mental state. Now, I knew there was something not right physically going on. Then i started burping solidly for the past 24. And I feel so much better and my tummy is no.longer bloated. I decided to look up online to try and find out what the hell was wrong with me as no one would believe me or entertain it was anything physically. Sad reality of having a mental health disorder, some GPs see that and nothing else. Im not being a hyperchondriac. I came across cealiac disease and a lot of the symtoms fitted my experience. I eat a lot of bread and pasta. Which Im going to cut out of my diet to see if it helps. 

I justbwant to know if its difficult to diagnose and if any of my experience rings bells with anyone. The hardest part is no one believing me. 

 

 

Ps im 57

[trents]

Welcome to the forum, Kojacs mum!

We have a number of people struggling with mental health issues on the forum who aren't taken seriously by their medical professionals when it comes to other medical problems. So, you are not alone.

Your gas/bloating/burping symptoms align with a gluten disorder, either celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no testing for NCGS at this point but there is for celiac disease. So, celiac disease must first be ruled out before concluding NCGS, which is 10x more common than celiac disease.

But please realize this: If you start removing gluten from your diet you will invalidate any kind of testing for celiac disease. You could trial a gluten free diet to see if there is improvement in your symptoms but you would need to go back to eating regular amounts of gluten for two months if you decide to go for testing after trying the diet. And for he trial to be effective you would need to cut out all gluten, not just major sources like bread and pasta. Gluten is hidden in many commercial food items that you would never expect to find it in, like soy sauce for instance. It can also be found in meds and supplements and oral hygiene products. Here is a primer for getting serious about the gluten free life-style: 

 

[Kojacs mum]

Oh thank you so much for the reply. I have a doctors appointment in 2 weeks. I would like to try gluten free for a few days just to see what happens. And a respite from feeling like i do right now would be good. 

With the regular amounts of gluten for the test, is once a day enough? 

I will see how the next few days go and take it from there. I still dont understand whats going on with my skin. There is a lot of dry skin coming off my face and i know thats from my skin picking. I cant see skin coming of my body but it feels like it is if you know what I mean.  

Thankyou for actually taking me seriously and helping. Its appreciated so much 

[trents]

The Mayo Clinic guidelines for the "gluten challenge" before testing is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks before the blood draw for antibody testing. I would strongly discourage you from withdrawing gluten from your life now if your doctor's appointment is only two weeks away. We have so many people join this forum who sabotaged their testing by going gluten free beforehand. And then they are stuck in limbo because the test results are negative or marginal. 

[Kojacs mum]

14 minutes ago, trents said:

The Mayo Clinic guidelines for the "gluten challenge" before testing is the daily consumption of two slices of wheat bread (or the gluten equivalent) for 6-8 weeks before the blood draw for antibody testing. I would strongly discourage you from withdrawing gluten from your life now if your doctor's appointment is only two weeks away. We have so many people join this forum who sabotaged their testing by going gluten free beforehand. And then they are stuck in limbo because the test results are negative or marginal. 

That sounds doable as i was eating pretty much a bread and pasta based diet. So hopefully if it does cause symtoms they are not as bad as recently 

 

Thanks once again 

[trents]

Could your gastric issues be caused by the methotrexate? When I research that med I come up with gastric issues as one of the listed side effects.

[Kojacs mum]

5 hours ago, trents said:

Could your gastric issues be caused by the methotrexate? When I research that med I come up with gastric issues as one of the listed side effects.

I spoke my consultant about that when the gastric stuff started as id noticed it myself. But she said it wasnt a common thing. I really dont know whats causing my physical stuff. Ive stopped my methotrexate just for one week, im on another monthly biologic drug which also affects the immune system. Its difficult that no one is taking me seriously, not even my boyfriend? I live in scotland and my health board isnt the best. It took me about ten years to finally get referred on for.my joint issues. I have psoritic arthritis.  I saw the consultant and she knew within 2 mins of my appointment what I had. Unfortuneately a lot permenant damage had already been done to my knees and ankles. Anyhoo that off topic. But I really dont trust the GPs a the moment as they think its all in my head. 

[knitty kitty]

@Kojacs mum,

Welcome to the forum!

I understand what you are talking about!  Same thing happened to me!  I got really sick and was repeatedly told it was all in my head.  It wasn't.  

I had undiagnosed Celiac Disease, which causes malabsorption of essential vitamins and minerals.  My doctor had prescribed medications to treat symptoms of undiagnosed CeD (high blood pressure, hyperglycemia, IBS, bloated like toad).  Some of those medications are known to cause Thiamine deficiency.   

 I had to look up your medicine.  Methotrexate is a medication that causes Folate B9 deficiency and Thiamine B1 deficiency.

High anxiety and weight loss without trying to lose weight are both symptoms of Thiamine deficiency.  Panic attacks and tachycardia are other symptoms of Thiamine deficiency.  

Trichotillomania and dermatillomania (skin picking, excoriation) are caused by a deficiency in Pyridoxine B 6.  Mine was made worse because I have Dermatitis Herpetiformis which causes itchy bumps.  My skin was actually flaking off because of  eczema and Niacin B3 deficiency.  Riboflavin B2 deficiency caused rashes around the mouth.  Pyridoxine B6 deficiency caused neuropathy which can make the skin feel creepy-crawly.  Cobalamine B12 and Folate B9 deficiencies affect the nerves, too.  

My doctors missed my Thiamine deficiency.  They had been taught Thiamine deficiency only occurs in alcoholism (I don't drink) and Third world starving countries.  Doctors are trained to prescribe pharmaceuticals.  They aren't given a lot of training in nutrition and vitamins and minerals.

As a microbiologist, I know how important vitamins and minerals are to the body functioning properly.  Once I started correcting my deficiencies, my health began to improve.   

I agree with @trents, keep eating your regular amounts of gluten containing foods.  A Celiac panel of blood tests are done to measure the amount of antibodies against gluten.  If you change the amount of gluten you eat, you could be affecting the results of the tests.  

I'm concerned the immunosuppressive medications you've been taking might have suppressed your antibody production, so the blood tests for the Celiac panel might be inaccurate.  Best to ask for genetic testing to see if you have any genes for Celiac Disease.  

Talk to your doctor about a Erythrocyte Transketolase test for Thiamine deficiency.   (Do not take vitamin supplements before tests for vitamin deficiencies.)  

I do hope this helps.  You're not alone.  I believe you.  {{{Hugs}}}

References...

Protective effect of benfotiamine on methotrexate induced gastric damage in rats

https://pubmed.ncbi.nlm.nih.gov/33325753/

And...

Protective effects of benfotiamine on irisin activity in methotrexate-induced liver injury in rats

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6963132/

And...

https://www.hormonesmatter.com/notes-on-folate-carriers-anti-folate-medications-and-thiamine-deficiency/

And...

https://www.hormonesmatter.com/notes-on-folate-carriers-anti-folate-medications-and-thiamine-deficiency/

And...

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://pubmed.ncbi.nlm.nih.gov/31019473/

And...

The Role of Vitamins and Minerals in Psychiatry

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/

[Kojacs mum]

I could cry thankyou so much. Im going to have a wee bit of toast each day and hope it doesnt affect me too much. Being beleived is the biggest thing I started to think that I was goinf mad. Ive done all the wrong things without knowing. 

Im not taking my arthritic meds right now. I dont really want to discuss that with my rheumy doctor until I know whats going on. I can livebwith pain and in not getting about much right now as feel so weak. 

Im jjust trying to deal with symptoms as they pop up and trying not to panic. My sons away at the moment  but hes back today. Hes my touchstone. Only 18 but an amazing guy. 

Im sipping peppermint tea right now. Its foul but it helps clear the bloating.

Once again thanks so much for the info and support. I felt like I had no where to turn to. 

[Kojacs mum]

1 hour ago, knitty kitty said:

@Kojacs mum,

Welcome to the forum!

I understand what you are talking about!  Same thing happened to me!  I got really sick and was repeatedly told it was all in my head.  It wasn't.  

I had undiagnosed Celiac Disease, which causes malabsorption of essential vitamins and minerals.  My doctor had prescribed medications to treat symptoms of undiagnosed CeD (high blood pressure, hyperglycemia, IBS, bloated like toad).  Some of those medications are known to cause Thiamine deficiency.   

 I had to look up your medicine.  Methotrexate is a medication that causes Folate B9 deficiency and Thiamine B1 deficiency.

High anxiety and weight loss without trying to lose weight are both symptoms of Thiamine deficiency.  Panic attacks and tachycardia are other symptoms of Thiamine deficiency.  

Trichotillomania and dermatillomania (skin picking, excoriation) are caused by a deficiency in Pyridoxine B 6.  Mine was made worse because I have Dermatitis Herpetiformis which causes itchy bumps.  My skin was actually flaking off because of  eczema and Niacin B3 deficiency.  Riboflavin B2 deficiency caused rashes around the mouth.  Pyridoxine B6 deficiency caused neuropathy which can make the skin feel creepy-crawly.  Cobalamine B12 and Folate B9 deficiencies affect the nerves, too.  

My doctors missed my Thiamine deficiency.  They had been taught Thiamine deficiency only occurs in alcoholism (I don't drink) and Third world starving countries.  Doctors are trained to prescribe pharmaceuticals.  They aren't given a lot of training in nutrition and vitamins and minerals.

As a microbiologist, I know how important vitamins and minerals are to the body functioning properly.  Once I started correcting my deficiencies, my health began to improve.   

I agree with @trents, keep eating your regular amounts of gluten containing foods.  A Celiac panel of blood tests are done to measure the amount of antibodies against gluten.  If you change the amount of gluten you eat, you could be affecting the results of the tests.  

I'm concerned the immunosuppressive medications you've been taking might have suppressed your antibody production, so the blood tests for the Celiac panel might be inaccurate.  Best to ask for genetic testing to see if you have any genes for Celiac Disease.  

Talk to your doctor about a Erythrocyte Transketolase test for Thiamine deficiency.   (Do not take vitamin supplements before tests for vitamin deficiencies.)  

I do hope this helps.  You're not alone.  I believe you.  {{{Hugs}}}

References...

Protective effect of benfotiamine on methotrexate induced gastric damage in rats

https://pubmed.ncbi.nlm.nih.gov/33325753/

And...

Protective effects of benfotiamine on irisin activity in methotrexate-induced liver injury in rats

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6963132/

And...

https://www.hormonesmatter.com/notes-on-folate-carriers-anti-folate-medications-and-thiamine-deficiency/

And...

https://www.hormonesmatter.com/notes-on-folate-carriers-anti-folate-medications-and-thiamine-deficiency/

And...

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://pubmed.ncbi.nlm.nih.gov/31019473/

And...

The Role of Vitamins and Minerals in Psychiatry

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/

Forgot to say I takevfolic acid regularly when im taking methotrexate. I am also on cosentyx monthly. Thank you again do much 

[Kojacs mum]

1 hour ago, knitty kitty said:

@Kojacs mum,

Welcome to the forum!

I understand what you are talking about!  Same thing happened to me!  I got really sick and was repeatedly told it was all in my head.  It wasn't.  

I had undiagnosed Celiac Disease, which causes malabsorption of essential vitamins and minerals.  My doctor had prescribed medications to treat symptoms of undiagnosed CeD (high blood pressure, hyperglycemia, IBS, bloated like toad).  Some of those medications are known to cause Thiamine deficiency.   

 I had to look up your medicine.  Methotrexate is a medication that causes Folate B9 deficiency and Thiamine B1 deficiency.

High anxiety and weight loss without trying to lose weight are both symptoms of Thiamine deficiency.  Panic attacks and tachycardia are other symptoms of Thiamine deficiency.  

Trichotillomania and dermatillomania (skin picking, excoriation) are caused by a deficiency in Pyridoxine B 6.  Mine was made worse because I have Dermatitis Herpetiformis which causes itchy bumps.  My skin was actually flaking off because of  eczema and Niacin B3 deficiency.  Riboflavin B2 deficiency caused rashes around the mouth.  Pyridoxine B6 deficiency caused neuropathy which can make the skin feel creepy-crawly.  Cobalamine B12 and Folate B9 deficiencies affect the nerves, too.  

My doctors missed my Thiamine deficiency.  They had been taught Thiamine deficiency only occurs in alcoholism (I don't drink) and Third world starving countries.  Doctors are trained to prescribe pharmaceuticals.  They aren't given a lot of training in nutrition and vitamins and minerals.

As a microbiologist, I know how important vitamins and minerals are to the body functioning properly.  Once I started correcting my deficiencies, my health began to improve.   

I agree with @trents, keep eating your regular amounts of gluten containing foods.  A Celiac panel of blood tests are done to measure the amount of antibodies against gluten.  If you change the amount of gluten you eat, you could be affecting the results of the tests.  

I'm concerned the immunosuppressive medications you've been taking might have suppressed your antibody production, so the blood tests for the Celiac panel might be inaccurate.  Best to ask for genetic testing to see if you have any genes for Celiac Disease.  

Talk to your doctor about a Erythrocyte Transketolase test for Thiamine deficiency.   (Do not take vitamin supplements before tests for vitamin deficiencies.)  

I do hope this helps.  You're not alone.  I believe you.  {{{Hugs}}}

References...

Protective effect of benfotiamine on methotrexate induced gastric damage in rats

https://pubmed.ncbi.nlm.nih.gov/33325753/

And...

Protective effects of benfotiamine on irisin activity in methotrexate-induced liver injury in rats

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6963132/

And...

https://www.hormonesmatter.com/notes-on-folate-carriers-anti-folate-medications-and-thiamine-deficiency/

And...

https://www.hormonesmatter.com/notes-on-folate-carriers-anti-folate-medications-and-thiamine-deficiency/

And...

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://pubmed.ncbi.nlm.nih.gov/31019473/

And...

The Role of Vitamins and Minerals in Psychiatry

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/

Another thing i forgot. Ive told no one this for fear of dis believe. I thinknthe flaking skin blocked my anus. Ive been slow easing it out for the past 24 hrs. I just could face look of "oh no whats she imaging now" i clearef some of the bloating yesterday but just kept coming back. I couldnt burp it out qiuckly enough. Ive been on the toilet for half an hour and ive streched the skin a little  it my anus is contraxting constantly calming down a little now as a lot of trapped faecal matter and the stuffbin my bowel has come out. The is also urine trapped which is coming out

[knitty kitty]

@Kojacs mum,

I believe you.  Sphincter muscles like the anus need Thiamine and magnesium to relax and open.  

You said you are feeling weak so you're not getting around much.  Feeling that weak is a symptom of Thiamine deficiency that signals to me you need to seek medical attention soon.  

Ask your doctor for an IV of Thiamine and glucose.  It doesn't hurt to try taking Thiamine.   It would at least rule out Thiamine deficiency if it doesn't work.  You could have improvement in a few hours if it does.   

Thiamine is nontoxic even at high doses.  High doses of thiamine are needed to correct a deficiency.  (See that second article for dosing.)  

Cosentyx (secukinumab) targets interleukin (IL)-17A, an inflammatory cytokine.  Thiamine lowers interleukin (IL)-17A, too.  

References:

The effect of secukinumab treatment on hematological parameters in ankylosing spondylitis and psoriatic arthritis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7574766/

And...

Repurposing Treatment of Wernicke–Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7960760/

I have had a bumpy journey, so if what I learned can help you on your journey, my journey was well worth it.

Please keep me posted on your progress.  

[Kojacs mum]

Ok. Lots of developments really quickly. Got to a point where i thought i was actually becoming psychotic. So i had a proper look at my bottom. Nothing really of note. Then had a look in my vulvic area and noticed an open wound around 5 cm in diameter. It had white stuff in it but it was dry to the touch and a little sensitive. Its near my eurethra. I just couldnt cobtact the medical professionals as no one was beliveing me. Cut a long story short i got to a point where i felt suicidal  i felt i had no where to turn. But i contacted my Community Psychiatric nursing team. I have regular input anyway. She was the first person to believe me. Crying now its all had a very negative impact on my mental health. Anyway. She persauded me to get calm and go to the docs.

Shes not sure whats happening so shes sent for a tonne of bloods. Ive not mention celiac stuff as yet. Ive also got an urgent gynecologist appointment.

Since shes fidddled with me there seems to be a release of something and my bowel is starting to function a little better.

I do still think I may have some kind of celiac issue  going on. I will see what the bloods show up. I get regular bloods on methotrexate, my last set was 2 months ago and showed no abnormalities. Its realky to kerp an eyes on my liver funtion and my inflammatory markers. I am feeling a litter. Keep having a bit of urinary incontinence but i think what evers down below is causing that. So much going on.

God bless my mental health team for believing me.  I have a psychologist Ivsee fornightly, this has shattered me a little but shes amazing too and i will get there. Im a retired psychiatric nurse and Im so proud of my profession at the moment 

 

 

 

[frieze]

Having psoriatic arthritis increases the likely hood of celiac.   Reinforces the idea that one auto immune disease dx should  lead to checking for other auto immune diseases.

[knitty kitty]

@Kojacs mum,

I'm glad you went to see the doctor and are feeling a bit better.

Wernicke's Encephalopathy is the altered brain function psychosis which is a symptom of Thiamine deficiency.  

An Erythrocyte Transketolase test for Thiamine deficiency while at the doctor's would have been helpful.  If only to rule it out.  The Erythrocyte Transketolase test is not a part of "normal" blood work.

Keep us posted on your progress.

Edited September 30, 2023 by knitty kitty
Typo correction

[shadycharacter]

On 9/28/2023 at 9:25 AM, Kojacs mum said:

Hi my name is Jane. I have a bit of a long story so please bear with me. 

Bit of info before I start, im arthritic prescribed methotraxate an immumosuppressant, i also have a long history of depression and anxiety. My anxiety has recently become much worse and its never been a predominant feature with me. Ive also lost a lot of weight recentlynwithout trying  over a period of about 6 mnths I would say.

Anyway, over the past year or so Ive had unexplained gastric problems. Severe bloating, runny poo can never remember how to spell that the proper way. I looked pregnant i was that bloated. Was told i had IBS although none of the meds did anything to help. Im also ptone to pick, if im honest with myself, to excess and recently after a lot of stress i picked to excess.  I ended up with a lump by my ear that i though was an infection in my ear. Treatment didnt help. So on I went picking and evetuallynpicked atbthe lump and dry skinbstarted coming off my body rapidly which made me feel so.ill i thought i was having a heart attack. Noone in the medical profession would beleive me and put it down to my mental state. Now, I knew there was something not right physically going on. Then i started burping solidly for the past 24. And I feel so much better and my tummy is no.longer bloated. I decided to look up online to try and find out what the hell was wrong with me as no one would believe me or entertain it was anything physically. Sad reality of having a mental health disorder, some GPs see that and nothing else. Im not being a hyperchondriac. I came across cealiac disease and a lot of the symtoms fitted my experience. I eat a lot of bread and pasta. Which Im going to cut out of my diet to see if it helps. 

I justbwant to know if its difficult to diagnose and if any of my experience rings bells with anyone. The hardest part is no one believing me. 

 

 

You could also try cutting out lactose to see if that helps. Lactose can make bloating and related symptoms worse for some as it's fairly common that people have a reduced ability to digest lactose as adults. People with untreated coeliac may also have a problem digesting lactose. There are lactose free alternatives for most dairy products. Cutting out lactose won't  interfere with testing for gluten intolerance.

[Wheatwacked]

Hi Kojacs mum,

The good news is you are not crazy and you are not alone.  You are, though, suffering from malnutrition.  You might say it out loud to the doctor.  They may deny the possiblity, but you'll be on record and it may invoke a more urgent response from them. That's why the doctors can't figure it out.  They are looking for a disease they can treat, not nutritional advice.  I counted 19 different symptoms that improved on gluten free, some that went back to my childhood and was told "nothing wrong".  But even if you are diagnosed with Celiac Disease or Non Celiac Gluten Sensitivity, GFD alone will not fix your malnutrition.  You need to replenish and store the essential vitamins and minerals you are not getting from food at a rate well above the minimum RDA.

From the mum I take it you are UK.  There is financial assistance for a Celiac Diagnosis in the UK I believe; so worth pushing for the diagnosis as @trents and @knitty kitty recommend.
You might want to ask for a short course of prednisilone to replace the methotrexate until testing for Celiac is completed.  It will take away most of the pain in hours at the right dose.  I've been on it for 11 years now.  Once I started gluten free diet two years later, I was able to reduce my dose from 30 mg a day to 5 mg. The side effects of prednisolone are less dangerous than methotrexate and some of your symptoms are side effects listed for this drug.  It is obviously not doing the job intended.  See the quotes below.

While waiting on the doctors start these essential nutrients, food source is best, but very hard with your gastro issues.  

• Choline for your digestive issues.  Could we be overlooking a potential choline crisis in the United Kingdom?
• Start taking Thiamine or Benfothiamine as @knitty kitty suggests.
• Vitamin D for your compromised immune system and mental anguish. That's why the doctors can't figure it out.  They are looking for a disease they can treat.  From you description you are well below the 50 nmol/L minimum blood level.  I keep mine at 200 nmol/L by taking 10,000 IU a day since 2014.  Hypervitaminosis of vitamin D is very rare, dispite the dire warnings. In truth, because we are 40% of the population low in vitamin D, only 1 million in the US have skin cancer, but 41 million have autoimmunediseases.    Vitamin D and Depression: Where is all the Sunshine?;
•  Vitamin D and the Immune System;
•  Our study supports a causal relationship between vitamin D deficiency and mortality. ;
•  Possible Role of Vitamin D in Celiac Disease Onset
•  

Quote

"Check with your doctor immediately if any of the following side effects occur" More common side effects of Methotrexate: (from Mayo Clinic):

1. Black, tarry stools
2. bleeding gums
3. blood in the urine or stools
4. bloody vomit
5. diarrhea
6. increased heartbeat
7. itching, rash, reddening of the skin
8. joint pain
9. nausea
10. pinpoint red spots on the skin
11. sores in the mouth or lips
12. stomach pain
13. swelling of the eyelids, face, lips, hands, feet, or lower legs
14. swelling or inflammation of the mouth
15. trouble breathing
16. unusual bleeding or bruising
17. vomiting
18. yellow eyes or skin
19. Less common
20. Back pain
21. bloody nose
22. blurred vision
23. body and muscle pain
24. burning while urinating
25. confusion
26. continuing ringing, buzzing, or other unexplained noise in the ears
27. cough or hoarseness
28. cracked, dry, scaly skin
29. dark urine
30. dizziness
31. drowsiness
32. ear congestion
33. fever or chills
34. headache
35. loss of appetite
36. loss of hearing
37. loss of voice
38. lower back or side pain
39. painful or difficult urination
40. pale skin
41. runny nose
42. seizures
43. sneezing
44. sore throat
45. stuffy or runny nose
46. unusual tiredness or weakness
47. weight loss
48. white or brownish vaginal discharge
49. Incidence not known
50. Anxiety
51. blistering, peeling, or loosening of the skin
52. bloating
53. blurred or change in vision
54. changes in skin color
55. confusion
56. constipation
57. decreased interest in sexual intercourse
58. difficulty in moving
59. dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
60. dry mouth
61. dryness or soreness of the throat
62. eye pain
63. fruit-like breath odor
64. heartburn
65. inability to have or keep an erection
66. increased hunger or thirst
67. indigestion
68. irritation in the mouth
69. large, flat, blue, or purplish patches in the skin
70. loss in sexual ability, desire, drive, or performance
71. loss of consciousness
72. menstrual problem
73. night blindness
74. pain in the chest or groin
75. pain, redness, swelling, or tenderness in the arm or leg
76. red skin lesions, often with a purple center
77. red, wart-like spots on the skin
78. sudden loss of coordination
79. sudden onset of slurred speech
80. swelling or soreness of the breasts
81. swollen, painful, or tender lymph glands in the neck or armpit
82. tingling or numbness in the hands, feet, or lips

 

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Quote

 The effect of methotrexate on the cortisol levelsRheumatoid arthritis patients were started on methotrexate while cortisol levels, adrenocorticotropic hormone levels, and clinical improvement were monitored. It was found that a low to normal-low baseline level of cortisol is a good predictor of possible methotrexate efficacy in treating rheumatoid arthritis. On the other hand, high baseline cortisol levels are a predictor of a failure of drug efficacy. 

 

[Kojacs mum]

Hi therr. Has any one heard of eurethraderma or sometimes called exfoliatve dermetitis. At the moment my dead skin is sheddingvrapdly. Im managing my symptoms and keeping my fluid up. Its an allergis reaction andv3 of the drugs i am are known to cause it. Once again the lovely scottish health service are not taking me seriously. So ive stopped all my meds for now. I will contact my rhumetology team tomorrow. Its a medical emergency apparently that no one here seems aware of. Thanks again all of you. I dont know what i would have done over tha past few days with out you 

[knitty kitty]

Our prayers are with you!  

Do keep us updated!

 

 

[Kojacs mum]

Hello you wonderful.people,

Managed to see someone today and got antibiotics in case my skin was infected. I felt immediatley better. So the chills, the sleepiness, the confusion i had been feelingvwas not me being exhausted. I was heading toward septic shock. I had another look at the thing wound thing down below its got bigger and has what thing might be dry pus. Not sure? Will get the gpnto have another look. Still having horrendous tummy prob.

 

 

 

[Kojacs mum]

12 hours ago, Wheatwacked said:

Hi Kojacs mum,

The good news is you are not crazy and you are not alone.  You are, though, suffering from malnutrition.  You might say it out loud to the doctor.  They may deny the possiblity, but you'll be on record and it may invoke a more urgent response from them. That's why the doctors can't figure it out.  They are looking for a disease they can treat, not nutritional advice.  I counted 19 different symptoms that improved on gluten free, some that went back to my childhood and was told "nothing wrong".  But even if you are diagnosed with Celiac Disease or Non Celiac Gluten Sensitivity, GFD alone will not fix your malnutrition.  You need to replenish and store the essential vitamins and minerals you are not getting from food at a rate well above the minimum RDA.

From the mum I take it you are UK.  There is financial assistance for a Celiac Diagnosis in the UK I believe; so worth pushing for the diagnosis as @trents and @knitty kitty recommend.
You might want to ask for a short course of prednisilone to replace the methotrexate until testing for Celiac is completed.  It will take away most of the pain in hours at the right dose.  I've been on it for 11 years now.  Once I started gluten free diet two years later, I was able to reduce my dose from 30 mg a day to 5 mg. The side effects of prednisolone are less dangerous than methotrexate and some of your symptoms are side effects listed for this drug.  It is obviously not doing the job intended.  See the quotes below.

While waiting on the doctors start these essential nutrients, food source is best, but very hard with your gastro issues.  

• Choline for your digestive issues.  Could we be overlooking a potential choline crisis in the United Kingdom?
• Start taking Thiamine or Benfothiamine as @knitty kitty suggests.
• Vitamin D for your compromised immune system and mental anguish. That's why the doctors can't figure it out.  They are looking for a disease they can treat.  From you description you are well below the 50 nmol/L minimum blood level.  I keep mine at 200 nmol/L by taking 10,000 IU a day since 2014.  Hypervitaminosis of vitamin D is very rare, dispite the dire warnings. In truth, because we are 40% of the population low in vitamin D, only 1 million in the US have skin cancer, but 41 million have autoimmunediseases.    Vitamin D and Depression: Where is all the Sunshine?;
•  Vitamin D and the Immune System;
•  Our study supports a causal relationship between vitamin D deficiency and mortality. ;
•  Possible Role of Vitamin D in Celiac Disease Onset
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Ive always hated being on methotrexate. Its being reduced with a view to stopping. I was precribed it ten years ago when tge arthritis was out of control and it helped a lot but never really felt comfy with the risks. Thanks for that list of side effects. It will help when I phone tomorrow. 

[knitty kitty]

Thiamine should be given in septic shock. 

Insights Into Thiamine Supplementation in Patients With Septic Shock

 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8832096/

 

[Kojacs mum]

The hardest part to all of this is, Im trying to figure it all.out on my own. Well, until now I feel armed and its worth more than any other thing you could give me.

Thisvwhat I know for sure. My dead skin cells  are coming off rapidly. Ive been exfoliating so there is no visable build up. Ive stopped that. Its hard to show evidence so Im not being believed.

Antibiotics have stopped the syptoms I mentioned.

My digestive system seens in over drive. 

My appetite is getting there but Im scared to eat. Ive got meberverine so Ive been taking that. It seems to help.

 

Im going to look for thiamine suppliments. Im taking multi vits. 

Sorry for not answering indiviually. My concentration is awful, but know I appreciate all the input so.much

[Kojacs mum]

Vitamins ordered. 3 for 2 at Holland and Barrett.... result!

Can I still take the multivits with these ?