I am feeling rather sorry for myself today and needing to let off steam and also see if anyone has any advice. I had the pleasure of a gastroscopy last week - during which a hiatus hernia was discovered - and then a protracted ATOS WCA a couple of days later (took over two and a half hours, much of which was spent trying to sit in the world's most uncomfortable chairs, then had a long journey home). Although the latter did make the gastroscopy seem like a fun day out!..... Anyhow, I am now utterly wiped, in a lot of pain, brain fog, feeling very down, etc - 4 days on. Is this usual for someone with Lupus after such 'exertions'? And what about hiatus hernia? Does this occur more commonly in Lupus (and/or Hughes Syndrome) persons? I have been told to take Omeprazole for GORD (acid reflux) but this seems to cause me a lot of indigestion (belching like a herd of hippos; severe pain; wind) and I'm concerned about the long-term effects of not having an acid stomach to kill micro-organisms in my food, etc. I am considering a very low GI diet but any other advice, your own experiences welcomed!
In the well of self-pity, acid reflux and post AT... - LUPUS UK
In the well of self-pity, acid reflux and post ATOS WCA gloom....
MrsMouseSJ....I am sorry for your troubles. Only thing I can share is that I think I have low acid stomach since I am hardly ever hungry, and I feel like when I eat-the food just sits there. I am taking a digestive enzyme which seems to help with moving things along, but still very slowly. This enzyme is suppose to break down the food in the upper stomach so that undigested food doesn't carry along into your small intestines. (*Becomes leaky gut. Nutrients lost in the small intestine). The lecturer stressed saving the body energy by doing this. If the food doesn't get broken down in the stomach, the bad bacteria breaks it down in the small intestine and produces carbon dioxide. I have been on for 3 weeks, and it seems to be doing something. I feel like my body is absorbing the nutrients from my food better. I am not totally moving along still, but I take before every meal. Some other member told me that it make take up to a year to straighten things out. I am sticking with and hope that things will improve. The doctors don't do anything with hiatus hernia's? Just medicine, right? Two of my sisters take Prilosec.
Hi Natura. Many thanks for your kind words. I was also very pleased to hear from you as I have previously spotted some of your posts, I believe, re digestive enzymes and I think you recently went to a talk on them? Which ones do you use? Polyzyme? They do seem worth a try. Do you take additional stomach acid, as HCI, too? (obviously not a goer for me with the hernia). Best wishes.
I take enzymedica digest spectrum...suppose to breakdown gluten as well...I tried the digest gold since I got a free sample. Didn't notice the difference too much...more tummy cramping and it was a lot more money. Went back to the digest spectrum. I also take natto k to keep my blood thin..might have that sticky blood lupus. Going to see rheumy finally to find out in May. Two of my brothers have and I was getting a lot of migraines. The migraines r gone since I have been taking that enzyme. I am a little nervous about taking HCL, but may need it since I am still moving along slowly. I think I am going to wait a little on that. I wouldn't know how much to take. I guess before every meal. I am just amazed at how the body is malfunctioning. I don't feel that old. I am only 50. What is a low GI diet? Very interesting about killing micro organisms...I am going to have to look more into that. Hope you can find some help.
Hi Mrs MouseSj
Did you get a result from your ATOS experience?. If your not happy then your local Citizens Advice bureau would be able to help with an AppeAl.
I too have a hiatus hernia and don't have problems taking Losec but there are lots of other drugs you could try. Your GP could help with this. Also I find cutting out windy things like onion, pepper and cucumber help symptoms. I was shocked when mine was found a few years ago!. Sorry your having a tough time and hope it eases for you.X
No ATOS result yet; can't wait for that (not!). Very interesting your examples of 'windy things'. For several years now I've been unable to tolerate peppers, cucumbers and only small doses of onions, plus potatoes and tomatoes. Not wind as such - well, not audible! - but clearly not gut friendly. Thought it was just me.... Thanks for your kind words and best to you.
Hi MrsMouseSj
How long ago did you have your Atos Assessment?. They are taking a long time to give results. It makes me cross how much stress they are causing to people who least deserve it!. Hope you hear soon.X
Hi misty14. It was only last week and the assessor did say to me that the decision makers are taking weeks to get back to people. However that doesn't, as you say, make it right. Plus my assessment was a full 7 months later than it should have been (!), which means that I have been on basic rate ESA for 7 months longer than I believe I should have been, plus I am assessed on how I am now rather than how I was at the time I should have been assessed. Clearly unacceptable and I raised the matter with my MP. The actual assessment was dreadful - in that they were running well over an hour late, so I was first asked if I wanted to come back another day. Well, as it takes over an hour for me to get to the centre and my husband has to take me, no! Then the assessment took ages - nearly 90 minutes. By which time I could barely stand, let alone walk. It's taken me 5 days and a lot of painkillers to get back to anywhere near 'normal' functioning. I know I am far from alone in my experience. So, I can only say that I am fully with you in terms of being furious about the way in which I and others are being treated. Still, old Iain Duncan Smith and pals can continue to smugly claim that they are reducing the benefits bill and proclaim to journalists that he/they could easily live on £70ish a week whilst living on very comfortable salaries and expenses. (As you might be able to tell, I literally have steam coming out of my ears!) Anyhow, I shall sign off now before my blood pressure gets too high!....
Hi MrsMouseSj
I'm even more cross now at IAn Duncan Smith , what he is putting people like you thru to get to only a third who cheat!.Those assessments sound so wickedly cruel! Hope you are feeling better. Let us know when you get your result, hope it's not too long. X
i have this problem and gallstones My consultant got me to change from Osomeprazole to Esomeprazole and as long as I take this have no problem with reflux I have been told there is no difference between them and its just another version of the same but I certainly can confirm that there is!
MrsMouseSJ...just talked to a nutritionist at vitamin shop about HCL with pepsin. I just took the first one with my meal. Was told to take digestive enzyme separately. Wasn't sure how separate and found one site that said to take hcl after a few bites, and then take dig ezyme. I took it a little later. This is a plant based enzyme that I read will not dissipate from hcl. I will let u know how I do. I actually feel less bloated and able to breath better. Sometimes I feel like my stomach is up in my rib cage and I can't take deep breathes. I am going to try for awhile because I read low HCL is what causes heartburn because the proteins don't digest and they ferment and give off gas, which in turn puts pressure on your LES (lower esophageal sphincter) pushes it open and acid reflux goes on and gives you heartburn. Unbelievable.....There is a complicated method in taking HCL supplements and knowing how much to take. Also an at home test to see if you have low HCL. Why can't you take with a hiatal hernia? Just curious. I always thought I had a hernia because I couldn't digest my food. Maybe not related. I never got tested for hernia. Hope u r feeling ok today...
Hi Natura. Thanks so much for this; really interesting. And I will very interested too to learn how you get on with the digestive enzymes, etc; do let me know. Until the other day, I hadn't realised that my breathing problems were caused by a hiatus hernia - which I assume yours also are? No medic has really gone through things with me and it was only when looking at people's experiences and comments on a number of gut-related online forums that the light bulb went fully on. Although I had realised it was something to do with my diaphragm - years ago I was on holiday in Spain, went wild on the shellfish and red wine and then simply couldn't breathe. Rushed off to A&E where a very nice Spanish doctor did an x-ray and told me that my stomach was full to the brim with gas, which was pushing my diaphragm right up and impeding my ability to breathe properly. Did I have the hernia back then, over 20 years ago? Who knows? Anyhow, I had used HCL for a few years - I came across it via Dr Sarah Myhill, who treats M.E. and various other autoimmune and similar conditions, and found it very useful indeed. But in 2012 I had extremely major surgery and never resumed it. Once I found out about my HH (caused by the surgery or pre-existing? Guess I'll never know) I thought it would just make things worse but simply adding to the acid available to reflux. But perhaps not.... I shall have to give it another bash. 
I could have an HH. I felt problems after my 2nd daughter. Could have happened after the delivery. Don't know. So far, the HCL is working. I could breathe better yesterday. I was so happy jumping around that my family thought I was a little Kooky. Today, I am struggling a little again. Apparently, your suppose to keep increasing the HCL at each meal until you get a burning sensation in your stomach. I just took 2, with my digestive enzyme, and I still don't have the burning sensation. So, I am suppose to increase with the next meal. So interesting... Thank you so much for your support and sharing. I just tried to share with my sisters and brothers, and got some backlash from two that think I am trying to tell them how to live..Uggh! I am only trying to help. Why don't they see that. I am upset...
Ah, family!... As for the HCL, I never took until I got a burning sensation. I simply took to the dose that stopped me belching during and after meals, etc. Personally, I found that a carb-rich meal required only a modest dose, whereas a meal with a lot of protein required somewhat more. As you say, trial and error, and I do wish you well. As for taking HCL with an HH, in theory it should make things worse - as the hernia is what should be stopping the LES from closing properly. But I am rather a fan of trying different things - provided they are not obviously dangerous - and seeing what works best, even if it does fly in the face of conventional medical wisdom. As the Omeprazole seems to make me belch more and gives me lower gut discomfort, I think it's worth giving other things a whirl. I also realise I missed an earlier post by you where you asked what GI is: glycemic index. If you Google it, you'll find all the info you could ever wish for, and more!
Thanks
Just to say I also cannot tolerate Osomeprazole and changed to Esomeprazole. The difference was really noticeable. I also take a peppermint capsule in the morning and found that this helps with my stomach problems also. Been down the road off cameras up and down!. I too have a hiatus hernia and have found out that joint hypermobility can cause this, which I have been diagnosed with. If you don't already, have ago trying the peppermint and have recently started having an actimel in the morning as well after having quite a nasty course of antibiotics which upset my stomach. Good luck, thinking of you. xx
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