The Australian Sjögren's Syndrome Association
1,758 members543 posts

How manage breathing and gain weight without gluten sugar dairy and eggs.

Hi i am a new number here. I have diagnosed Sjogren's Syndrome May 2017. I have got RA on my left hand. Immune attacked my airpassge way which nose polyps blocked nose, throat sore and tighten chest to feel short breathing. I am on plaquenil and prednisone. Joint pain i can manage but the breathing i can't. Also I have lost 8 kg through 7 months. I am on gluten, sugar, dairy ,egg white free due to i am allergic to them.I am desprate. Please who has the similar experience and guide me that how cope with it. I am appreciated.

12 Replies
oldestnewest

Hi Xiao,

I was diagnosed with Sjogrens 3/13. It’s been almost 5 years. I was very sick. I was tested for food allergies and am now gluten, (all grains), dairy, sugar and egg free. I have done a lot of reading because I wanted to do whatever I could to keep from getting worse. I have had my ups and downs, but generally in good health now. I have taken plaquenile the whole time. My weakness seems to be in my lungs and have had several long serious bouts with bronchitis . My rheumatologist referred me to a pulmonologist and Inwas on an inhaler for 6months but no longer need it. Shortness of breath often is a sign for me to rest. Seems to feminist if I listen to my body. I’ve also had prednisone which helps when I’m sick but only temporarily. I also use essential oils and practice deep breathing with them. Cold air or dusty air seems to aggravate my breathing or any quick change in temperature.

Patience and finding what works for you personally is the key. We are each so different. This site has been helpful. Hoping your symptoms ease.

Daisy

1 like
Reply

Hi Daisy , it's great to hear from you. Your experience give me idear and confidence to figjt the disease . I will seek pulmonologist for consultation. Also I am intrested on diet. I am constantly loose weight. From May 2017 on plaquenil to now , i have lost 8 kg. It scared me. I am 164 cm only left 50 kg😭I tried hardly but it wasn't working.

Gluten free, no grains , no dairy and eggs so how to maintain health weight and energy ? Please give me a tip.

I am appreciated and thanks a lot.

Cheer

Xiao

Reply

Xiao, losing weight so quickly is a concern. I eat a lot of vegetables,especially greens, I drink almond or coconut milk. There are many recipes online. Google AIP Protocol and AIP recipes. It helped me a lot. I also eat meat, chicken, fish. And sweet potatoes. Almond butter. Have you had your thyroid checked also? There is so much to learn. Just take it one day at a time.

1 like
Reply

Good afternoon Daisy. Thanks for your reply and concern. I was hypothyroidism and took Ruthrox 75 ug daily since 2000 year. Last year Nov i found my T3 T4 was high then stopped the medication. Now I'm monitor the Thyroid function. I worried. I talk to my GP and rhmatologist but they say nothing about it. Just said that maybe due to the stress. I dont think so. I tried hardly to put weight on but it seemed still loosing. I am very frustrated. I had done some bool test about cancer but haven't find something yet. Is plaquenil impact the absorption ? I take 1 and 2 plaquenil alternatively. I have no big appetite but i tried to eat more. I will search google AIP. I heard that almond and ccounut are high allergic food so never try yet. I would like to try. 👩

Reply

Xiao, you have been through a lot. I admire your persistence. If the doctors are ignoring you, find another. Stress is a big contributor to our disease. It’s very important to try to minimize stress when we can. Let me know what your test results are when you get them. Hope you know soon.

1 like
Reply

Hi Daisy

i have got my blood test result yesterday. Most of them was fine,but the white cell and neutrophils account were lower which always been . I think it caused by the plaquenil side effects,(how about you?). Because I tried to put weight on which I had a lot of coconut oil so that my cholesterol is very high. Didn't get any weight but got cardio risk. I still haven't got the answer about loosing weight. My GP said I didn't eat carbohydrates enough but i don't think so. About stress , I feel that I have got no tress at the moment. Only stay home for recovery from injuries. Maybe anxious impact on me.

Very frustrated.

Xiao

Reply

Daisy next Tuesday evening I will got blood test results the i will let you know. Have a nice evening with your family.

Reply

Hello Xiao,

I don't know that I can help you at all but wanted to let you know that many of us here understand the variety of symptoms you have due to our various autoimmune conditions.

Did you say that you have been to see a pulmonologist for your lung symptoms? Have you had any scans to see whether you have changes in your lungs? My pulmonologist is amazing as he understands how autoimmune conditions particularly something like Sjögren's,Syndrome can affect the lungs.

Regarding your food allergies I don't have any, so I can't help you in that regard but I have had SS associated gastrointestinal problems since I got ill with SS. For five years I could only eat/drink liquid foods. That was a very difficult time.This shows how each of us are affected differently.

Did you have problems with food allergies before you got SS?

As many of us have found this condition is certainly more than solely dry eyes and dry mouth.

Let us know how you get on.

Regards

Megan

Reply

Hi Megan thanks for your help. From 2012 year I started sneeze a lot . I thought I have got hey fever and took antihistamines but I had to take everyday. My GP diagnosed that allergic rhinitis. I went to allrgic specialist and had done a lot of tests with no results. Last year I been searching and believed that I was allergic to food. I had done some blood test for allergy but nothing about food. After May last year I was diagnosed Ss.

About September , a lady told me about Naturopath then I went to Empower health Natiropath clinical. I was diagnosed leaky gut and it cause I am allergic to food. I think it maybe is part of the SS. Naturopath dose help, I removed all the food might cause allergic to but I lost a lot weight . I have no idear why it happened.

Where is your pulmonologist? My GP haven't referred me to the pulmonologist yet .But I needed and been searching for a good pulmonologist.

My lungs had done CT scan shows mild Atelectasis.I have got a lot problems. Dry Eye, mouth and acid reflux.

Regards

Xiao

Reply

I relate to all of the above .I started with Burning Mouth Syndrome then the dry eyes and mouth and everywhere else. My teeth all broke and I lost the lot. Many chest infections last few years, ,have COPD and chronic asthma etc.I also take Plaquenil and also Lyrica. Have spine problems, crooked back, degenerated discs etc. BUT I am 83 and doing most of my own housework--just cleaned a corner cupboard and am B----ed right now. Sjogrens is not much fun, but it does not kill you ,just makes life unpleasant --so my doctor said many years ago. And most people do not see that we have a problem. I saw so many specialists and not one was any real help. Had my thyroid killed with R A I and take thyroxine. Better days ahead for you all I hope.

4 likes
Reply

Hi willybilly, admire your spirit. You make me confidence. I woul like to overcome myself and live with SS.🤑

1 like
Reply

You can and you will overcome a lot. Once I accepted there was no real answer I felt better. I started with terrible major clinical depression and one of the docs there told me not to go chasing doctors as there was no answer and I was only going to be disappointed each time. He said his female colleague had all the symptoms and could find no help. Plaquenil helped, being hypo and not hyper thyroid also helped. I have had a lot of stress too. Of course I did go chasing doctors. I have COPD and asthma, probably because I smoked for years but now I wonder how much damage the immune system caused. Each time I need to see a doc I find he/she has moved away so right now I don't have one. Will have to find one soon. Had a lot of eye ops, mainly due to negligence and incompetence of the first specialist. Losing my teeth was the biggest blow. good luck

1 like
Reply

You may also like...