ceoliac disease.

[Missbisous]

any fellow Ceoliacs out there with G CA? My friend of 25 years accidentally glutened me yesterday at lunch and usually I am sick within an hour. I didn’t happen. Is it the steroids ( im on 30 mg pred). as being a ceoliac is another auto immune disease ? Not that I would ever risk eating gluten !

[piglette]

Pred can be used for treating ceoliac disease, so perhaps it did help.

[Missbisous in reply to piglette]

Oh. Never heard of that ! But yes maybe it helped on that occasion.

[piglette in reply to Missbisous]

Quite good that it did!!

[Dance62]

Hi , I also have coeliac and GCA and have been on pred since last September. To be honest, I can't say that being on steroids has made any difference for me. I still have the same reaction I always did if I eat gluten.I hope that it has made a difference for you and wish you well.

[Missbisous in reply to Dance62]

Thank you. It was so strange not to throw up !! I won’t be risking it in the future. Have been on a gluten free diet for 25 years so usually very sensitive.

[Missbisous in reply to Dance62]

Thank you.

[PMRpro Ambassador]

I was going to say that if you correct the spelling of coeliac you might get Related Posts but they appear to have disappeared again! But try searching the forum for coeliac.

I can't see why pred would stop the problem but I suppose it might at a high enough dose - and as piglette says it is used in refractory disease.

I had an allergy to wheat starch that made me itch, we thought it could be coeliac in the skin form - and pred calmed it down. Actemra has done a much better job and I seem to be able to eat anything now.

[Gimme]

A bit like PMR, corticosteroids can help manage the symptoms, but does not make the underlying autoimmune condition go away. Prednisolone has been used to help people who are newly diagnosed to help the gut repair or to manage the inflammation in coeliac crisis, but studies I have seen do not agree on whether there is a statistically significant improvement by adding pred to the g/f diet. Given the side effects of long term corticosteroid use, treatment tends towards a g/f diet alone. And definitely an 8 week course of pred did not make patients seronegative in either the g/f groups or the pred + g/f diet. You still need a g/f diet to prevent the long term damage to health that gluten can do to a coeliac.

I don't have GCA, I have PMR, but I am probably an undiagnosed coeliac. Sadly, I was tested after I had given up wheat, so I tested negative for coeliac. If I am not coeliac, then I could still be non-coeliac gluten intolerant. I know that I am reactive to gluten, one way or another, so I follow a g/f diet. My own observation is that my GI symptoms have been a lot more stable since I started pred and my dose has been 5-6 mg most of the time (much lower than yours).

I have to say that, in addition to the GI symptoms, before I went g/f, wheat used to give me symptoms that are very like the symptoms that I get from PMR. I had muscle and joint pain, extreme stiffness, fatigue, brain fog and additionally hot flushes and palpitations. I had thought at the time that these were early menopausal symptoms, but within a few days of stopping wheat, those symptoms either cleared up completely or started to slowly improve.

[PMRpro Ambassador in reply to Gimme]

I ate g/f for years and I still don't eat much - I'm not sure it is the gluten as much as the carbs in PMR since in being g/f I was also low carb as g/f products are high in both carbs and calories so they were kept for treats - g/f jaffa cakes are better than normal ones!!

[Gimme in reply to PMRpro]

I have been g/f now for about 20 years and I sure do know if I accidentally gluten myself. It's foods with added sugar and seed oils used in cooking that make my PMR symptoms kick off and ultra processed foods, which tend to be high in both of those. I don't eat the g/f replacement foods for that reason. They are junk, as far as I am concerned. I avoid anything that has an ingredient list that looks like it came out of a chemical factory instead of a kitchen. Potatoes seem to be a fairly safe source of carbs for me, though I don't eat a lot of them. Luckily, I don't have a sweet tooth and ice cream is my only real sin. It's banned from the house.

[PMRpro Ambassador in reply to Gimme]

Luckily I'm not that sensitive. At least I don't think I am! I don't think I felt worse in the 2 months in Scotland - that daughter is vegan, food tends to be carbs, more carbs, with a side of carbs! But the weather wasn't ideal either. No, I can't be doing with junk food of any sort and the icecream I eat is the recognisable ingredients variety from our local superb gelateria! I took my ancient icecream machine over for the daughter so the icecream there was almost all homemade and I saw what went in. She did have fun.

I cook fairly much from scratch but it tends to be a lump of meat and veggies from the airfryer or salad, can't be bothered to do much else. Eating out here is also fairly safe - proper homemade food at the places I usually go.

Just forced myself to catch the bus up to a restaurant at the end of a valley where they know exactly what is in their meals and it is superb. It's a mountain refuge only halfway up and the bus goes to the door - handy for those who can't walk! And like a campsite - there is always someone to talk to since eating out on your own isn't that much fun really.

[Gimme in reply to PMRpro]

Well, as we have discussed before, I have generally felt that the PMR is part of a cluster of health issues that I have that are potentially autoimmune linked, along with the dietary intolerances and classic atopy. I had endometriosis badly when I was younger and I have seen references in the literature that suggest that you are more likely get an auto immune illness if you have been diagnosed with endometriosis. I am prediabetic and have been borderline hyperthyroidic for the last 20 years and my thyroid function is tested 1-2 yearly. I can't help wondering if it is all linked.

[PMRpro Ambassador in reply to Gimme]

I believe it isn't a range - you have Gimme syndrome, I have PMRpro syndrome. And slowly, the scientific world is starting to get their heads round that concept. Just like Long Covid, it comes in various shapes and sizes, can't be cured, just symptoms managed. If they could see that, life would be far easier for us!

[Gimme in reply to PMRpro]

omg, not sure I need to feel even more special. 🤣

[cranberryt]

prednisone has not made any difference with me celiac response or with being glutened.

[AtopicGuy]

The 2018 study linked below explains how prednisolone can be used in recently-diagnosed coeliac patients, and those whose disease is not controllable via diet alone (refractory disease):

ncbi.nlm.nih.gov/pmc/articl...

[Flutterbies57]

I accidentally got glutened a few weeks ago . I am on 3mgs (just PMR). Horrendous! The worst . A whole new scenario of problems . Maybe a bigger dose did help you ?

[Missbisous]

yes I really think it did and reading the comments where pred has been used in the beginning when diagnosed as a coeliac is very interesting. ( wasn’t 25 years ago ). ! Usually I’m so sick within an hour when I’ve been gluttened.