I have lupus & vasculitis, but am unable to tolerate oral meds so have seen a gastro-enterologist & awaiting appointment with allergy specialist. The gastro cons wants me to have GI endoscopy for "completion sake," but I am too poorly at present. She never asked me about food intolerances, or mentioned that this test will be for coelaic disease. My rhuematologist happened to drop that into conversation, which was rather a surprise.
I have been limiting my dairy intake for approx 10 years, due to it causing migraines & sickness. But more recently have noticed reactions to many bread products. So I've been cutting these out & considering going GF, to see if it helped my overall health.
So should I put myself through an endoscopy, that might come back negative anyway. Or stick to my guns & go GF, in the hope I will regain some quality of life?
Many thanks in advance. Roobarb. X
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My sympathy, the last thing you want is an invasive test when you are feeling ill already. Did they give you a blood test for the Coeliac antibody? Although not totally conclusive, a positive result would indicate Coeliac Disease and I'm wondering if that's what they mean by "completion" as the endoscopy is usually used to confirm it.
If you haven't had the antibody test, you'd need to stay on a diet containing a lot of gluten until its taken and that would also be necessary for an endoscopy. If the blood test hasn't been done it would be best to stay on gluten/wheat until you've seen the immunologist and ask them to test it.
The advantage (!) of having the endoscopy is that if you are confirmed as coeliac you get some free prescription foods weekly and an official diagnosis and support for it. It just depends on how important prescriptions/full diagnosis are for you. I manage fine without both, but its a very individual thing.
As you already have Lupus, which is an auto-immune disease, Coeliac Disease or Non-Coeliac Gluten Sensitivity could be very likely. They often appear in people with other auto-immune illnesses (I have thyroid disease and NCGS).
Even if not Coeliac, gluten intolerance (NCGS) can cause some horrible symptoms including, IBS, aching joints and fatigue. I'd do some research or ask to see a decent dietician before attempting to go gluten/wheat free though. You'd need to watch out for cross-contamination of foods and nutritional replacements. Let us know how you get on and hope you feel better soon.
I don't know if I've had the blood test, but I will check. This is all very new to me &, as I say, came as a surprise. I feel I need to speak to the GI consultant more about these issues before I go ahead with the endoscopy. But would like to get it done, to know for sure if I am coeliac, & before I cut out gluten, when it will be invalid.
Free prescription foods would certainly be a help, as well as the advice of a dietician. There is so much to learn about this subject. It seems that, as with lupus & other auto-immune diseases, diagnosis is rarely clear cut.
You mention NCGS, is that condition recognised by health professionals? The reason I ask is because I was misdiagnosed with ME before the lupus. Some doctors I came across would not accept that this was a real illness. Which, as you can imagine is very distressing & frustrating.
HI Roobarb, You have my utter sympathy and understanding on misdiagnosis. Before it was found that wheat gluten was causing my problems (partially by blocking cellular absorption of my thyroid medication) Fibromyalgia was suggested and I was also tested for Lupus!
A notice was sent out to GPs earlier this year by either the British Medical Association or NICE to inform them of the growing problem of NCGS (Non Coeliac Gluten Sensitivity) after extensive studies were carried out by the University of Maryland, USA. So your GP *should* know about it (not a guarantee tho!) and your GI specialist should definitely be aware of it. It sounds like a good idea you discuss your fears and symptoms further with them before proceeding with any diet changes.
My "formal" diagnosis - as recognised by my GP and Immunologist after a mix of positive and negative test results and my refusal of the endoscopy - is NCGS.
Jerry has given you some great pointers (as he has for me in the past) and so has DrTomOB, both in particular with regards to your Dairy/Lactose intake. Think about getting that properly tested too maybe? It really is all or absolutely nothing with food intolerances! With any auto-immune issues I think its really important to give your immune system as much support and as little stress, nutritionally, as possible.
From my own research I think some of the problems of auto-immunity and food intolerance/allergy are not fully understood as yet. I recommend reading Dr Chris Kresser's article here - chriskresser.com/50-shades-... - this and some of his other articles go some way to explaining why being gluten-free might help your other health issues once you have been fully tested/diagnosed.
It's really helpful to know what to expect of the health community as I embark on this. It took 9 long & difficult years for me to be diagnosed with lupus, & I guess I'm expecting it might be the same with coeliac/NCGS.
Do you mind me asking why you didn't have the endoscopy?
I don't mind you asking at all. I had a bit of an unusual journey, and went gluten-free previous to seeing a gastroenterologist after testing positive for wheat allergy, although later tests showed my reaction wasn't severe enough to be a true allergy. When the Gastro appointment finally took place I was very unhappy with the consultation and decided it wasn't worth putting myself through the stress of reintroducing wheat and having all the symptoms back or undergoing a procedure with a doctor I felt very uncomfortable with.
I'd hope my experience was the exception to the rule though, on all counts! If you are worried about the procedure I'm sure someone round here who has been through it can better assure you if you ask a separate question specific to that.
I'd have another talk with your Gastro and get him/her to explain things better to you. It certainly shouldn't be a long process with this because there is more recognition medically now for Coeliac/NCGS, so don't worry. Best wishes, Rita
Many thanks Rita, it's very helpful to hear about your experiences. X
Hi Roobarb and I am sorry for you. A few things interest me in what you say here, firstly have you come across drug induced lupus? please see: nlm.nih.gov/medlineplus/enc...
Now none of us relished the thought of an endoscopy but it is a means to an end and I do not think that your consultant would put you in for one if you were too poorly. To me a 'formal' diagnosis puts you in the system and you get the follow up needed like access to a dexa scan and medical follow ups. Also you'd know for sure that you are gluten intolerant. Like Rita I do not get food on prescription even tho' I could so that to me is not an advantage.
So you want my advice, then I'd talk your fears and trepidation's through with your Dr/ specialist and see what they say. Going gluten free without a formal diagnosis might work but you would be left wondering if you were a coeliac and then if you did want a formal diagnosis you would have to go through a gluten challenge which's much harder if you have been gf for a while as gluten has a much more dramatic effect on coeliac after they have abstained from gluten for a while.
There are members of GFG who are self diagnosed and that was their decision and I respect that. There are also members who have been diagnosed through a genetic test which I believe that they had to have privately, so you could discuss this option with your specialist first but I would urge caution on going gf before diagnosis.
Hi Jerry & thank you for your reply. I have heard about drug induced lupus through Lupus UK. My illness started 15 years ago before I was on any meds. As the illness has worsened, so has my sensitivity to foods & medication & my weight has dropped drastically in recent months. It never occurred to me that gluten might play a part in this. Thank goodness the rheumatologist happened to mention it.
It has helped me greatly to find this site & read about other peoples experiences. I have so much to learn though, & will be checking out your withoutgluten site, mentioned in your blog. From reading this it seems that you suspect you may have been coeliac from childhood. I have no reason to think this, although I have had auto-immune issues all my life. Do yo know if it is possible to develop gluten sensitivity later is life?
You are so right to say I need to speak to the consultant. I will contact her to arrange this, before I re-book the endoscopy appointment. I am currently having a course of chemo for the lupus, & once this is finished I hope to feel strong enough to go through with the procedure.
Formal diagnosis would make a huge difference. Not least for follow up appointments & professional advice. If the test proves to be negative, I can still try going GF to see if it helps. I have come across many lupus patients who have found it has helped them immensely.
Do yo know if it is possible to develop gluten sensitivity later is life?
Yes it is, coeliac tend to be born with gene markers HILDQ2 & or HILDQ8 but what makes it kick in is not clear. With many female coeliac it is triggered by childbirth or trauma. Also many diagnosed coeliac children 'appear' to grow out of it in adolescence and seem to be able to eat anything hence some people thinking that they'd grown out of it but it will kick in again.
You have read my profile and I had issues as a child grew out of them in puberty but then in my mid 20's it kicked in with a vengeance and I had some photo's of me on holiday 2 years in a row and in one I looked really healthy carefree and happy a year later I looked like I'd been in a prisoner of war camp that and really spooked me.
If you are a coeliac then going gf can make all the difference and I feel really well and am really healthy so it's worth it in the end. So just because you are struggling at the moment you must have hope for the future. And since being diagnosed I feel better than when I was younger and undiagnosed. If you are diagnosed as a coeliac then focus on what you can eat and take it one step and one day at a time.
Something else that might interest is you is lactase (the enzyme that breaks down lactose) is produced at the tips of our villi so if you are a coeliac and your villi is flattened by the ingestion of gluten then you could be temporarily intolerant to gluten.
Lastly I wish you well and any questions then you just ask away. (We were all newbies once)
Many thanks again, Jerry. I am sorry to hear what you have gone through on the road to diagnosis, but it's great to hear how well you are now.
Coeliac disease sounds similar to lupus, in that it takes a trigger for it to become active. For me I think it was possibly a severe allergic reaction to nuts, which I've had all my life. Along with some problems with Hep B vaccinations, both of which happened in close proximity. I have also noticed that the has lupus become worse during traumatic times in my life.
As you say, it is good to have some hope for the future in a potential diagnosis. But I am also aware that this might be another difficult road to reach this. My faith in the medical profession has been knocked, I'm afraid.
In the meantime, I realise it's important to continue eating gluten, although this is difficult knowing what it could be potentially doing to my health. So I guess the sooner I can get the dreaded endoscopy done, the better!
I normally do not contribute to these discussions, but there's something about you that pulls to help. Here you go.
Very sorry for your suffering and I commend you for reaching out for help. While I agree with Rita's line of logic for a consumer, Jerry's thoughts are a bit more comprehensive.
And if I may give my 2 cents (given that I am in the US and do not have 2p's :-))
You have received a diagnosis of 2 potentially debilitating autoimmune diseases (Lupus and Vasculitis). You have noticed a reaction to many bread products and are considering going GF.
You have a history of severe reactions to dairy (migraines and 'sickness') so you have been "limiting" your dairy intake. Here is the danger in your situation that likely puts you at risk of more severe levels of autoimmune damage and symptoms.
What makes you think any level of dairy is ok for you? Or any level of gluten? You can not 'limit' intake-you must eliminate intake. If you carry a 'limiting' exposure to gluten and/or dairy forward, you very likely will continue the internal inflammatory cascade fueling the development of the antibodies currently destroying your tissue. "You can't be a little pregnant, with gluten sensitivity, you can't have a little gluten". A single miniscule exposure, in sensitive individuals can be like throwing gasoline on a fire fueling the inflammatory cascade which will burn (antibodies circulating) for months. From a single exposure.
The GF trial that you have already attempted, and seen benefit from, strongly suggests you have Gluten Sensitivity, with or without Celiac Disease. You need a comprehensive overview of the depth of this problem.There are many interviews available to listen to at thedr.com/index.php?option=...
Regarding the topic of an endoscopy from the Gastroenterologist, I fully agree with Jerry's overview plus would say that given you have already been diagnosed with 2 autoimmune conditions, the likelihood of CD is high. Make sure to request an IEL count (intraepithelial lymphocyte count) with the endoscopy. There are a number of reasons why this is important.
Thank you Tom. It is good to hear your point of view. As I have begun looking into this subject, the realisation has dawned on me that there is no "half way house" with gluten sensitivity. If I cut down, or eliminate gluten, I will only become more sensitive to even small amounts in my diet. Therefore, I need to find out formally if I am coeliac before I attempt radical changes to my diet.
With regard to lactose intolerance, this is also not formally diagnosed. It has only occurred to me as possibly being relevant since the whole food/drug sensitivity issues have begun to be investigated very recently. In fact, I had almost forgotten about it as I have become so used to limiting my dairy intake over the years. So here is another subject I need to broach with the GI consultant. It looks like I will be keeping her busy for some time to come.
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I had a bit of an unusual journey, and went gluten-free previous to seeing a gastroenterologist after testing positive for wheat allergy, although later tests showed my reaction wasn't severe enough to be a true allergy. When the Gastro appointment finally took place I was very unhappy with the consultation and decided it wasn't worth putting myself through the stress of reintroducing wheat and having all the symptoms back or undergoing a procedure with a doctor I felt very uncomfortable with.
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