Gluten Free and getting my life back

[JoeyP]

So I am slowly working through my health puzzle. Have had Hashimotos for 20 years and have always struggled to get my levels optimal . For about the last 3 years I have really struggled with all over body pain, joint pain and inflammation, fatigue, sleep issues, neuropathy and a blistering skin rash on my buttock that itches like hell whenever I ingest Gluten. Have felt broken and really depressed for so long. Was referred by my GP to a rheumatologist who advised I up my exercise and see a physio. I have had my antibodies checked for coeliac disease and they have come back negative. This was 3 weeks ago and I have since been gluten free and already feeling the benefit. I have more energy, less joint pain, sleeping better and brain fog is lifting. The rash has subsided leaving a purple scar. I shall definitely stay gluten free indefinitely as it is a no brainer for me ! Does anyone have a similar experience with gluten ? Is there anything else I should be doing?

[Suit]

Yes. But I'm positive on gluten. And you could ask for a skin biopsy.

If you are as sensitive as I am, then you need to mind additives in food.

You can either skip them completely, try and see what happens when you eat them, or ask the producers if the additives they used are derived from wheat or barley, or perhaps potatoes or something else. It's only if the additives are derived from gluten grains that they become poisonous for some of us. But its not labeled.

To make the list short and to cover most of it: anything that ends with - hol or - tol or has "dext" in the name, everything sugary and yeast-like, or starches and fillings COULD be a source to gluten.

Things commonly used like

Dextrin/dextrose

Glucose syrup

Alkohol, probably even ethyl alcohol

Cellulose

Potassium sorbate

Hopefully you're not that sensitive, because it's quite impossible to remember and know about all those additives.

After research, I found out that processing gluten isn't destroying the protein. It sort of just breaks it down into smaller compounds. But there's still some intact parts of the core of the protein.

My guess is therefore that the processed parts of gluten falls through the safety net when trying to catch them.

[Suit in reply to Suit]

Some coeliacs with itching are very sensitive to gluten exposure. Hence the advice to mind additives.

Others can eat quite a bit of gluten and still be fine. They don't need to mind additives.

[JoeyP in reply to Suit]

Thanks for this information. I shall be investigating this further. I really appreciate your support as not sure who to turn to as my GP doesn’t exactly know much about this ! 😊

[Suit in reply to JoeyP]

You could ask for a biopsy, if you want to know for certain for yourself. But I have been reading around, and found that some with hashimotos are advised to stay on a gluten free diet because it helps to manage the disease.

One study says "The gluten-free diet reduced thyroid antibody titers, as well as slightly increased 25-hydroxyvitamin D levels and the SPINA-GT index" (ncbi.nlm.nih.gov/m/pubmed/3...

There is supposed to be a correlation of some degree between the two diseases. In ten years maybe they've figured out that hashimotos is just coeliac manifesting itself on the thyroids. Because both diseases makes the body attack itself.

Rash is usually labeled as dermatitis herpetiformis, aka duhrings disease.

You could read on all those things to get advice on how to manage your well-being. But you already have a legit excuse to people around you to stay away from gluten, and don't need to defend nor explain or whatever. So getting a coeliacs diagnosis would perhaps be for yourself, to understand better.

GPs are hard to find. I turned to another district in my country, to a university hospital with what seems to be more professors in medical science and chief physicians than regular physicians. I know I might become a subject to research or education in turn, but it's ironic that I had to ask them to get help.

While I had to argue with gps to get a test done, these just phoned me up and said that I had been sent a paper to bring to my gp, because they needed a lot of tubes of blood before deciding if I qualify to see them.

I was shocked. I expected to be neglected right away. My common tests are usually always perfect, and within the range. Except blood pressure.

So another advice, if its possible where you are at, is to turn to the experts of experts. You might have to return the favor and become a part of their educational or research system though. But that's a cheap favor. These docs are a bunch of dr. House.

[Suit in reply to Suit]

I should inflict that these blood tests made me qualify to be scheduled for a follow-up.

[Lynilou]

One thing from my experience is that my blood tests never showed the gluten markers, so I needed the endoscopy to find out my coeliac disease diagnosis.

I also have thyroid problems and arthritis flare ups which occur following gluten episodes, rarely now thank goodness. My dr is aware and very good at following up any potential new autoimmune condition as once you are identified with autoimmune diseases it is possible there may be others. My advice is if you still do not feel well return to your dr, it took me over 5 years of misdiagnosed IBS, reflux and their associated medications causing more gut damage to get a diagnosis of coeliac disease.

[JoeyP in reply to Lynilou]

Thanks for your reply and experience. So do you think I should ask my GP to arrange endoscopy for a conclusive diagnosis? How was the endoscopy for you ?

I am thinking I should pursue this further just to be sure if I have damage to my villi.

Yes I understand having 1 autoimmune disease can lead to others but my GP is very dismissive of this leaving me feeling frustrated and worried about my health all on my own.

I appreciate your support 😊

[loueldhen]

Grain free. Stay away from processed foods. No point in a ‘diagnosis’. If on a diet of water (tea/coffee) meat veg fruit dairy (if you tolerate it) you still feel rubbish then it’s time to look at your meds.

[CJ384]

I've been gluten, dairy, and sugar free for 5 years. I haven't had any symptoms of Lupus since I changed my diet. Gluten, dairy, and especially sugar are inflammatory. Since Lupus is affected by inflammation, cutting out inflammatory foods (refined carbs, too) helps reduce the symptoms.

I'm glad you're feeling better since you cut out gluten.

[JoeyP in reply to CJ384]

Thanks for your reply. It certainly does make a difference when dealing with autoimmune diseases. 😊

[bookish]

3 ideas for books to help - The Autoimmune Fix by Tom O'Bryan, Why do I still have thyroid symptoms by Datis Kharrazian (Lots on Hashi's and Autoimmune conditions plus other things that interfere with thyroid function) and The Gluten Plan by Michaela Rose. Current coeliac testing misses so many people anyway - and corn can cause as much villi damage as wheat gluten. Losing the grains (all of them) has made a huge difference to me. Best wishes