I cooked supper for a friend and myself the other day. The following day I had all the usual symptoms of a glutening. The only thing I did different was serving a ready-prepared bag of green salad with supper, and ready-chopped fruit salad for dessert. This is the first time I had eaten ready-prepared fresh food since going gluten free. Having recovered reasonably well, I thought I dared risk it as I was unexpectedly too short of time to prepare anything else. Is this really a genuine risk, or was I maybe just unlucky and fail somewhere in my usually pretty careful environmental hygiene routine? I would be surprised I had purchased a rogue batch of food, as it was purchased from a very reputable retailer.
Hi there. I went gluten fee back in September at the suggestion of a rheumatologist who was inclined to think I didn't have a connective tissue disease as thought by my GP(suggested polymyalgia rheumatica), and who I convinced that if it wasn't that, then it was a gluten issue, despite negative antibody tests. Well, the gluten free diet fixed the symptoms which had been acute for up to a year (high ESR, highish TSH, lack of periods, photosensitive hives, itchy skin and spotty scalp, burning facial rash, mystery swellings, painful varicose veins, abdominal pain, joint and muscle pain, loose floating yellow stools or D, frequent migraines with nausea or vomiting, frozen shoulder, numb arms and tingly hands, acute fatigue, ovarian cysts, chronic sinus pain and nasal drip), many of which had been rumbling in the background for over 25 years (migraines, abdominal pain, loose stools, fatigue, ovarian cysts), so we agreed that I would go and see a gastro for follow up.
Well, anyway, not being keen to be asked to do a gluten challenge, and still suffering from significant fatigue, I waited until I had been gluten free for about 6 months. It took that long for me to pluck up the energy and the courage to make the appointment. I went to see a highly respected celiac gastro who did some more blood tests, an endoscopy and colonoscopy. I managed a gluten challenge for 2 weeks. The first week wasn't too bad, just abdominal pain and grumbly gut and stools, but the second week was nasty - increasing joint aches and pains, headaches and bad fatigue. At the end of the second week I was felled by a bad migraine with awful stomach pain, nausea and D. When this happens to me I can't eat anything at all. Had to do the colonoscopy prep on the second day of this, with the procedures the day after.
The procedures themselves were fine, and I was very happy to eat some safe food again afterwards, starting slowly of course as my stomach had been upset. What I think is interesting is the results. Please bear in mind that gluten intolerance is rife in my Mother's family. We have 5 biopsy-diagnosed celiacs (aunts and cousins), then me and another cousin under investigation, my mother and children and some others are untested, but definitely gluten and lactose sensitive at the very least. A few others have their heads in the sand on the issue. There is not one single member of the family going across 5 generations who is free from suspicious symptoms.
Results were that I have zero antibodies to any of the tests (it was a full panel), except a tiny, tiny level of anti-tTG. I did have high IgM antibodies prior to going gluten free, which were anti-cardiolipin antibodies. Nothing to do with celiac, but they did go away once I went gluten free. I also had completely healthy villi. A bit of inflammation, that's all.
At this point you think, ok I am NCGI. That's fine. At least I know for sure there are no other gastro nasties and that any lingering pain can be dealt with by experimenting with my diet. Maybe the gluten challenge was a bit short, but as I couldn't have managed a longer challenge, that is not worth grumbling about. So I ask about the genetic test. Because of the strong family history, I assumed it would almost certainly be DQ2 or DQ8. But, no! Neither of those groups. We also have many allergies in the family, and I have a allergy to an antibiotic, so I enquire about allergy testing. Answer, yes we ran IgE tests to the common food antigens, and all were negative.
So, still NCGI, but ever so slightly gobsmacked that I could be negative on every single medical marker to gluten or wheat issues, and yet still have signficant symptoms which are alleviated by a gluten fee diet.
I would like everyone who is struggling with a diagnosis to be aware that it is possible for gluten to make you sick even if you are not celiac, nor in the genetic group which indicates a potential disposition to gluten intolerance.
And beware of gastro-enterologists who tell you that if your blood tests are negative, and even if your bloods and your endoscopy are negative, that you should carry on eating gluten because you are not celiac. This happened to me 3 years ago, and it cost me a great deal of worsening health and worry until I figured it all out with the help of this site, and the confidence given my knowledge of my family history. Second time round, having sought out a celiac-specialist, the Doctor has been much more supportive with a reasonably conclusive non-celiac result, and is nevertheless supportive of me continuing on a gluten free diet.
For those of you who have more scientific knowledge than I do, can anyone answer 2 questions (the doctor couldn't):
1) If I am not DQ2 or DQ8, does this mean that my maternal aunts or cousins would not be too? Or could that marker have been "lost" by the slightly removed family link?
2) I had been fasting (forced) for over 48 hours when the blood was drawn for the IgE allergy tests. Would this render the results invalid, or do IgE antibodies linger in the blood for longer than that?
Many thanks for reading this post, and apologies if it was too long. I hope it contributes at least a little to our informal understanding of this strange condition.
Hi everyone. I've been basically shutting between home and work for the 6 months since going gluten free, and have only eaten a couple of times at trusted friends places. I have fairly strong reactions to airborne gluten and gluteny smells (mainly neurological), so am not keen on eating out unless it is in a gluten free place. At this point in time I also still need to keep to a mainly meat, fish and produce diet.
My family have decided they want to fly to New York and then have a road trip to Indianapolis to catch up with family we haven't seen for a few years for our summer holiday. Does anyone have any suggestions about self-catering accommodation in either of these places, and/or any gluten free restaurant/cafe recommendations? For New York we would stay in either Manhattan or in Westchester.
I am also a bit nervous about driving across country to Indianapolis, not because of the distance (we drove 2,000 miles last summer in Europe when I was sick and didn't know why...) but because of the difficulty of access to safe food during a long journey without all the usual picnic supports from home.
Any advice from more seasoned celiac travellers or residents of these places would be very welcome.