PoorlyPixie

I had a rant here about 3 months ago after I received the results of my own biopsy, and was advised to go gluten free anyway, which I still haven't done but I'm experimenting with foods and hope to be gluten free soon. I wanted to come here and ask your advice again, because my dad had a biopsy about 4 weeks ago, the results of which came today, and I am so surprised to read they're negative. They told him it was very likely that he had celiac because his blood test was transglutaminase positive. He has low iron, low vitamin D, reflux, and his long-term symptoms of M.E/Chronic Fatigue Syndrome which I know are also common symptoms of celiac. Everyone was sure he might have it, so I don't understand why his biopsy was "normal with no evidence" of the disease. The letter does however suggest further blood tests to see if he might develop celiac disease in the future. If his immune system is attacking and it's showing in his blood, doesn't that mean he's already developed it? Why would it do that if he didn't have celiac going on now? I've been encouraging him to try gluten free bread and biscuits but he's been reluctant, now he definitely won't. Should he? Or should he wave the whole thing off and continue eating his sandwiches like he did quite happily today? I guess they will tell him at the appointment. It's just so ridiculous because after he eats wheat he gets reflux! I was also counting on his results being positive...

Sorry I'm rehashing my story now, but since 2011 I've had severe, chronic reflux that has gotten worse with time and has remained a mystery after a barium, manometry and two endoscopies; IBS; light headedness/heavy/cotton wool head with brain fog; headaches and jaw pain; muscle pain and severe weakness; sensitivity to noise, light, and heat, also the sun; fatigue and crashing after activity; bone pain; also severe acne that only responds to antibiotics; dry and flaky skin; brittle, cracked and peeling nails; year-round allergies, like having a mild cold permanently; and the occasional mouth ulcer and bleeding gums. The absolute worst is the reflux, followed by the IBS and then my head. I haven't been able to spin in a circle for years. I can't dance. Can't exercise. I feel so dizzy and sick all the time. Can't bend over or lie down with the reflux. Have cut out all acidic foods and FODMAPS. I am underweight. The reflux doesn't allow me to drink much water now because it feels like I have a little ocean of acid/bile sitting in my esophagus and drinking just adds more to it. So my throat has been so dry for months now. Barium and endoscopy both showed acid/bile sitting there, and a hernia. Manometry presumably showed no reason for reflux like a problem with the wave or a loose LES. But my blood work was negative and then my biopsy was negative. I cried on my friend's shoulder when I got that letter, and I've been counting on dad's results since. Now... Now what?

I haven't heard from the hospital in 3 months, since my results came back. I don't know if they're waiting to figure out my father before figuring out me, or if they've discarded me. They told me I'm difficult. So I'm looking for gluten free foods but it's difficult without medical support, and being the only one in the house that wants to be gluten free, cross contamination is going to be a constant threat. Just persuading them to have a second toaster is a battle in itself. (Gluten free pancakes are all very well, but not if I put them in that toaster!) Honestly, I'm at my wits' end. I haven't been healthy since 2011. I'm only 28. I don't remember what it feels like to not have reflux, acid, bile; to eat anything with no pain or gas or toilet trips; to spin in a circle or go to amusement parks; what it feels like to have a clear head. I avoid sunny days. This was all triggered and set off at the end of 2011 by panic attacks and a hospital stay. Oh, I forgot to mention that my stools are often pale, like beech furniture (that might be a strange comparison!). I've really just... had it. 

So I'm not really sure what I'm asking... should we both go gluten free despite negative biopsies? Or might we just have M.E/Chronic Fatigue Syndrome, which my dad was diagnosed with 18 years ago? Thank you for reading!! 

Thank you. I am low on vitamin D and always have been, I was also low on B12 and was getting jabs at the surgery. The doctor told me yesterday that my B12 went up, but vitamin D is still low. I used to be on iron tablets, until I couldn't swallow them anymore. All of my medications are liquid or dissolvable now. The doctor didn't mention iron at all yesterday. My dad is taking iron, vitamin D, and B12 tablets because he's afraid of doesn't want the jab. 

I was crying in pain again last night but this time from the acid reflux. I'm going to spend today searching online for gluten free foods and planning a new trial diet. Thanks again for the advice, it's really appreciated, feel so frustrated! 

I don't get the rash but I do get inflamed acne, and I wonder if my immune system is attacking my skin and creating angry pimples! 

Thank you all for the replies!  

I'm searching for gluten free alternatives, but I'm struggling as I want to avoid acidic ingredients and possible IBS triggers. All of my symptoms are through the roof right now. I've had pain in my gut for two weeks, and last night I was yelling and crying from the pain of it. Eventually my dad called NHS 111 after midnight, and I had to do an assessment over the phone while I was in the toilet! Would have been embarrassing but I didn't care; glad it wasn't a man on the other end, though! We were told that a doctor would call back within 2 hours, so I waited on the couch with a pillow against my tummy. 4 hours later, still no call, and I was absolutely dog tired, so I told my parents I was going to bed because I desperately needed sleep. Apparently the doctor finally called after 5am, but just told my dad that he wouldn't have been able to come out and help anyway. My dad explained my symptoms and mentioned that his own blood test for celiac was positive, and the doctor told him that because celiac is hereditary, I still could have it. He advised more tests, but I've had everything! Barium, manometry, endoscopy and biopsy. 

We made an appointment to see a doctor today, and she was nice, but she admitted that they're stuck and have nothing more to offer me or advise. She said I just have to wait for an appointment with my gastroenterologist to discuss the next step, and she suggested we give the hospital a call to find out when that might be. She was going to send me for yet another blood test to look for celiac, but then she noticed that I'd had the full screening. Negative. So in the end I was just sent away. She does not believe in NCGS, and said ME/CFS is only diagnosed as exclusion, so she didn't want to label me. I could have screamed, "Please label me! Diagnose me and treat me!"  I'm very depressed at the moment. 

Thank you for the advice, I will continue to search for gluten free food. I think it will take me a long time to find things I can tolerate without just exacerbating my symptoms even more though. Oh yes, my stools last night as I was crying were kind of pale, a lighter brown - I'm sure I've read this is a symptom of celiac, but my villi were fine. 

Is it possible to have celiac disease but not yet have damage? Could it just be too soon for any damage? I've had the symptoms for about 6 and a half years, started eating a lot of bread one year ago. I wonder if my dad has had it for 2 or 3 decades, and I'm not sure if that makes a difference. 

This is my second thread within a few days, sorry it is long! My biopsy results came today, exactly 6 weeks after the endoscopy. They were "reported as normal." And I am honestly devastated. I've been crying all day. I needed those samples to come back positive, because I cannot - no, I will not - go on like this anymore. 

Some background: I had panic attacks in 2011 that eventually had me hospitalised with a heart rate of 170. After leaving the hospital I noticed I had constant indigestion and light headedness, symptoms that they assured me were due to the heart rate. When things calmed down, they said it was the beta blockers. After coming off the beta blockers, I started questioning my doctors why I had indigestion, acid reflux; why I was now light headed in the cinema, squinting and holding my head from the loud noise; why I was now sensitive to the sun, to light, to heat; and why I had symptoms of IBS. To cut a long story short, I've been getting treatment for IBS and especially the reflux since 2012, with absolutely no success. I've had every test and I now have a hiatal hernia and acid/bile in the esophagus constantly. I've also had muscle pain and severe weakness, and joint pain. After writing my doctor a letter last May, he suggested testing for celiac, as all my symptoms fit and my father had actually been found celiac positive in his last blood test, but my dad had no idea about that until very recently. I've had three blood tests - all negative. I've had a biopsy - negative. And I've been eating copious amount of bread and wheat for many months, and have never felt worse. 

The doctors tell me that the reflux will just stop on its own one day. I don't think that ever happens. I mentioned that my father had been diagnosed with M.E/Chronic fatigue syndrome in 2000, and that for a long time we've wondered if I might have inherited it. They didn't really say anything to that. 

I know it's not good to have celiac disease, but it has treatment, and it has hope. There are worse things to be diagnosed with, crohns, even M.E. There is no treatment for those. I don't want to have fundoplication surgery for the reflux and hernia, because it sounds awful and scary. The gastroenterologist didn't even think the surgery was necessary when I last spoke to her. But I really cannot go on with it, I refuse, so without a diagnosis of celiac, what's left for me to do? Just fundoplication. I was prepared to replace my food, was planning it. I've been researching for months. I even managed to delude myself into believing I have celiac. When my dad got a letter a couple of weeks ago about his last blood test being "strongly suggestive of coeliac disease," I hoped even harder. I thought it was a sign! I feel so foolish. Now I'll have to wait to see the gastroenterologist again to talk about... What? Fundoplication? She didn't even want to do it. She just shrugged and smiled and said I was a difficult patient. 

I'm going to see my dad's doctor this week, if I can, to talk about how likely it is that I might have celiac after all, regardless of my results, because of my dad's positive blood test, and to discuss the possibility I might have M.E/Chronic fatigue syndrome. In all honesty, I was prepared to look into M.E, until my dad's letter. Then I was even more certain my problem was gluten. Now they tell me, I have no problem with gluten. 

I feel SO ill right now, I can only describe it as "malaise." My head is light yet heavy, with pressure. My eyes are begging to close. My gut has been painful for over a week. I can feel acid reflux as always. My nails are cracked and peeling, as always. There is blood in my stools. My muscles are painful and so weak that I couldn't stretch out my arm while holding a mug without my arm feeling weak and wobbly. My legs were wobbling as I walked on Saturday. My gums feel as if there could be an ulcer. And I have acne, pale/yellow skin tone, and a headache is threatening. I just can't go on. 

Really thinking about giving up. I will try to go gluten free anyway, but my mum doesn't believe gluten is my problem and has been sceptical the whole time, so she is reluctant to learn about cross contamination in the kitchen. She just says it's not the problem and it's something else. I don't want to have NCGS because I don't think my doctors/gastroenterologists believe it exists. 

Thank you for any help :(. 

Hi guys. I've had three blood tests for celiac, all negative, and one biopsy that I'm still waiting for the results of. I have a lot of the symptoms, and my body has been breaking down and getting sicker over the past year. I have gut pain, constipation, piles, sometimes loose stools, gas, muscle pain, bone pain, a fuzzy/light head, noise and light sensitivity, bleeding gums and mouth ulcers. But the worst is chronic acid reflux, which has been resistant to treatment. The endoscopy I had on April 30th found a hiatal hernia, which I didn't have when I had my first endoscopy in 2015. The area was full of acid and bile, which I have always been able to feel, 24/7. For the last 6+ years I've been on the IBS and the acid reflux diet. No FODMAPS (which seems to be everything), and nothing with acid in, like citric acid. I've decided to go gluten-free now, without waiting for my results, and my father has just found out that his last blood test had raised transglutaminase and was "strongly suggestive of coeliac," which has motivated me even more. But finding gluten-free alternatives is proving difficult, especially bread.

The problem isn't so much taste, as acid and IBS triggers in the ingredients. All the gluten-free breads I can find contain acids like citric acid, honey, vinegar, and apple, and others contain possible IBS triggers like bamboo fibre (?) and Quinoa, which the jury seems to be out on in regards to IBS. I suspect I have to continue avoiding these ingredients as my gut is very painful and sensitive, and I'm worried about worsening gut symptoms instead of healing. Are these ingredients actually safe when the problem is (or could be) gluten? Or do they tear through the gut if the gut is damaged?

I wouldn't bother with bread, but I'm 10 pounds underweight and I get a lot of flak about it, and honestly I've been getting most of my calories through bread, and don't know how to get calories without it. There is so much food I have to avoid, if not "IBS" triggers, then acidic foods. I won't touch something acidic with a barge pole! 

I don't really know what my question is, I feel stumped here! But any ideas would be much appreciated. Also, I live in the UK, so some brands aren't available here. I wondered if supermarket-own gluten-free bread is OK for celiacs, as although it has the crossed grain symbol, isn't it manufactured in the same place, and therefore possibly contaminated? I thought I had this gluten-free-thing figured out months in advance (I've done a lot of reading since my doctor suggested celiac last year), but turns out, I haven't the foggiest what to do. I'm thinking of quitting food, to be honest with you. 

Thanks for any replies!?