Celiac or gluten sensitive?

[Holgal]

Hi all,

I'm hoping that someone with much more knowledge than me can advise me on what to do next? My history:

I am 44 years, female. I have always been mildly anxious, easily tired/lethargic, prone to nausea especially after eating, occasionally get mouth ulcers (some so painful that I can barely speak), sometimes diarrhoea/constipation for what seemed like no reason. I ignored all of this in my 20's (too busy socialising) and 30's (too busy parenting) but in the last few years I have been much more aware of my health and what I eat; eating more whole foods and vegetables. I have definitely felt better overall and the nausea has gone now but I'm still not what I think is 100%. I guess I don't know what normal is though. I have always thought everyone felt tired a lot and never understood how friends had energy to run marathons, businesses, stay up late every night.

Fast forward to the last six months. I have felt old. Just old and sore and anxious. I have developed in the last six months:

• Haemorroids
• General body aches and pains that move around the body, but particularly aching thighs at times
• Tinnitus
• Very sore neck when I bend it, the physio said it's in my joints and has been trying to treat it
• Body wide muscle twitching - sometimes big, sometimes tiny
• Body jerking when trying to go to sleep
• Tingling toes, soles of feet and sometimes up one leg
• Electric shocks/zaps in end of fingers
• Terrible terrible anxiety unlike anything I have experienced before
• Internal vibrations, I can feel something in my pelvis fluttering/spasming all the time (uterus/bladder?)

I am just so over it and so worried. I feel all these symptoms every single day. It's effecting my quality of life greatly. My doctor told me it was anxiety and put me on anti-depressants which I hate, I am tapering off them already. She is now referring me to a neuro to rule out MS and the like, even though she said she thinks its unlikely. I'm not displaying any symptoms like weakness, numbness, balance issues. I don't think anxiety is causing this, I felt the weird body sensations first which made me anxious.

I have now realised that it could be a gluten issue? I asked my doc and had a celiac test last week, it has come back as negative. However, I have not been eating nearly as much gluten in the last few months than I did before. Maybe four slices of bread a week, and some oats some mornings. So maybe that has effected the test result?

I also had a rash on the sole of my foot back in March, it was very very itchy with fluid filled blisters which I actually had to pop so the itching would stop. They would scab over and then more would appear. It lasted well over a month and was the same time that my neck started to hurt and the muscle twitching began. One doc was perplexed and thought it was shingles, another doc told me it was fungal. No cream really worked and I think it went away on it's own. Haven't had it since.

Ferritin: 45 (range 20 - 380, in November)
B12: 288 (range 140 - 650, in March)

Celiac test results below.

I am possibly gluten sensitive? Maybe I should get my current vitamin levels done to see if they are still in the normal range? I am taking magnesium now, it did lessen the muscle twitching a bit but I still have the twitching/jerking every day and it's definitely the most scary symptom for me.

My doctor doesn't really suggest anything unless I do, I had to ask her for the celiac test, and also for the vitamin levels that I've had done. 

Thanks in advance for your help. 

Edited June 22, 2019 by Holgal

[cyclinglady]

Welcome! 

You could have been gluten light prior to the two blood tests.   You could retest in 8 to 12 weeks after consuming gluten daily (1 to 2 slices of bread or equivalent).   Ask for the complete celiac panel too.  Also, note that about 10% of celiacs are seronegative.  In that case, the doctor would have to go directly to an endoscopy.  And here is the kicker, you only had the two tests (DGP IgG and TTG IgA).  In my case, I have never had a positive on those.  I am thankful that I had the complete panel and I am not even IgA deficient.  

You could consult with a Gastroenterologist, but your b12 and ferritin levels are normal.  That often is a sign of malabsorption (low ferritin was an indicator for me).      You could ask for a genetic test too as your lab results suggested.  

Once you have exhausted everything (not sure how your medical situation works and often there are financial limitations), you could just go gluten free for at least six months to a year or look for another autoimmune disorder or illness.  Something definitely sounds wrong!  

[Holgal]

Thanks cyclinglady for taking the time to reply, I appreciate it.

I have been gluten free for 5 days now and feel better. But I understand I need to go back on gluten to continue testing.

A few questions:

1. I am worried that if gluten is causing my neuropathy, then doing the gluten challenge will damage my brain or nerves further. I'm already quite scared that I have irreversible damage.
2. When you say low ferritin was an indictor for you, do you mean out of range ferritin? Mine is obviously in range but low, can that still be causing symptoms in my body?
3. Is it an option to be gluten free for the next 6-12 months and if my symptoms leave then it is a good indicator to the doctor that gluten is an issue? My doctor seems to be like a lot of people's doctors in this forum - thinks it's in my head and I need to "relax, go on holiday!". I know it's certainly not in my head.

Healthcare and testing is free when I live so getting another blood test is not a problem.

Thanks

 

[cyclinglady]

1.  Your symptoms could be attributed to celiac disease or not.  Five days on a gluten free diet is probably not going to cause healing that fast in a celiac.  Normally, you would need to be gluten free for at least six months.  You might just be feeling better, by simply cutting out some processed foods and not just gluten, for example.   Neuropathy can be due to so many illnesses (like diabetes) or exposure to medications like a class of antibiotics called  fluoroquinolines (e.g. Cipro which is an antibiotic).  

https://medlineplus.gov/druginfo/meds/a688016.html

2.  If your Ferritin is in range, I think you are fine.  I am not a doctor, but if I get a lab result that is within range, I tend not to worry.  Ferritin is just iron stores.  It is how you process iron, blood cell size and counts, and if your hemoglobin is low that helps determines iron-deficiency anemia.  

3.  You can go gluten free for six months, it will not hurt you.  However, it is often hard to go back on gluten if you ever wish to get a firm diagnosis.  This is fine for many people.  My own hubby has been gluten-free for 18 years now.  He is well.  But does he have celiac disease?  We will never know for sure.  Fortunately, I have a diagnosis (12 years after he went gluten free) and that has helped me get additional tests (bone scans, etc.) and to get our kid tested without hesitation from medical staff.  He will say that I get way more support from family, friends and medical.  He used to get the “eye rolling”.  With my diagnosis, family takes us both seriously now.

Has your thyroid been tested?  

Let us know how the neurologist visit goes.  Your primary care doctor seems to be supportive.  He or she did order a celiac screening.  

But you know your situation best.  Research and talk with your doctors to help you determine the best course of action. 

Edited June 23, 2019 by cyclinglady