UKGail

Gemini - that's really helpful. It makes a lot of sense, as I have been trying really hard to avoid gluten. I am sorry to hear that the damage to the pancreas can become permanent. Thank you for sharing.

Rhoda - sorry to see you have been struggling with cc or fat issues. You were kind enough to encourage me when I was miserable about fat digestion issues last week. As you suggested, digestive enzymes seem to work a treat with gas reducing by maybe 80 or 90% and I've been able to eat some salmon and a little non-dairy chocolate without suffering any further problems so far, so thank you for your help.

I looked into gallbladder problems and I am not convinced that it is linked to the fat issue. It seems more likely to be problems with its neighbour, the pancreas. I am not sure there is any proven link between pancreatitis and celiac, but if there is still inflammation/villi damage in the gut, then it seems possible that the pancreas might also be affected. Inflammation in the pancreas can also have an auto-immune basis. Treatment for mild pancreatitis is just to avoid alcohol, eat a low-fat diet and take digestive enzymes when needed. Autoimmune pancreatitis apparently responds well to steriod treatment. If you continue to have problems with this and you are sure it is not gluten cc, perhaps it is something to think about? I am going to mention it to doc at my follow up appt next week.

He is Dr Edwards at the London Lupus Centre in the UK. I did have to find a medical paper written by a celiac specialist (Dr Peter Green from the Columbia Celiac Centre) who quoted my exact presentation as a rare atypical presentation of Celiac (apparent polymyalgia rheumatica plus ESR (SED rate) of 100)as evidence though. He was kind and not affronted by my having done my own research.

You still could be having problems with digestion. I get fat malabsorption anytime I am glutened. It also could be your body is still sensitive and needing to heal. Celiac can mess with your digestive enzymes produced by the pancreas. I took creon(a RX pancreatic enzyme) for awhile and ate a very simple diet. After about three months I didn't need it anymore. I do take it when I get glutened though since the fat malabsorption returns when that happens. You also could have an issue with your gallbladder. Many people with celiac have problems with it also. There are over the counter digestive enzymes you can purchase, but I found that while they did help, they were not strong enough. As for the lump in the groin is could be an enlarged lymph node. I would suggest getting it checked.

Thanks Roda. I'm not familiar with pancreatic and digestive enzymes, but will look for them in our local health store. I'll also look into gallbladder things and mention it to my doctor if it seems neccessary. My doc is now arranging an abdominal scan which will hopefully found out what the lump is. I dont' think it is a lymph node (although painful lymph nodes are one of my symptoms) as I think (and I accept I may be wrong) they are to the left and right side in the lower abdomen, and my lump is in the centre. Anyway we shall see.

Being glutened definitely does not help with the fat malabsorbtion, as I think I have been glutened too. Yesterday was odd as that problem came first, and my first glutening symptoms usually seem to be extreme tiredness, stomach pain, and maybe a burning rash a bit later. That didn't follow until later on yesterday, and am still dragging myself around today with a burning face and arms. It is so hard to figure out if it is a food CC issue, another intolerance, or an environment CC issue. I think I will have to be careful in adding in new foods more slowly when I am feeling a bit better, to help me figure it out. It's hard though.

Thank you for your support.

Hi I am quite new to the forum and have been very appreciative of all the supportive information given by current and past posters to us newbies, so thank you all.

I have been gluten free for just over a month after persuading a rheumatologist that my "polymyalgia rheumatica" plus an ESR (SED rate) of 100 was due to familial celiac disease, and that I needed a gluten free diet rather than steroids. I also gave him an article published by Dr Peter Green mentioning that he had seen 2 cases of exactly that presentation. I test negative to the celiac blood tests.

My symptoms (going back 25 years) have been mainly neurological, with only grumbling abdominal pain, and periodic episodes of major abdo pain, sickness and diaorrhea (still can't spell it!), but this changed just a month before going gluten free, when my digestive system seemed to just give up the ghost. At the same time I developed skin rashes which seemed to have an element of photosensitivity (not blistery like the DH rash).

Going gluten free has been a huge relief, with a great reduction in many nasty symptoms, but have been battling nausea, lack of appetite, some non-gluten foods seeming to bring out skin rashes and tingly skin/muscles, and alternating C and loose stools. I quickly discovered that eating very plain unprocessed foods was the way to go, at least for now, and trying to cut out potential other nasties mentioned on this board (but not completely successfully in all cases). I have been very strict with the gluten free bit, and have tried my best to avoid cc in a kitchen shared with a messy husband and 2 teenagers.

Whilst most of this seems to be gradually settling down, the one thing which is really bugging me is whenever I eat any food containing any level of fat (small portion of baked sweet potato, salmon, nuts) my digestive system speeds right up and I get bulky soft yellow stools. Its an improvement on before because they are no longer loose and don't smell, but my insides are always sore and achy afterwards for a few days, and I have go to back onto the simple, no fat diet to get over it.

Is this normal for the healing process? I had thought that my insides would heal quite quickly as I have not suffered from the classic celiac symptoms like many of you, but this seems not to be the case.

Also I have a firm and sizeable lump in my groin (very low down and in the middle) which is new and tender but not painful. I can't find anything on the internet which seems to fit. Does anyone have any ideas?

I haven't been back to the Rheumatologist yet, but am due to go soon for a review, but don't wish to go until I feel more certain about what is normal celiac recovery and what might not be, so I don't moan unneccessarily about things.

Any thoughts on this from anyone would be really helpful.

Best wishes to you all.

I tested recently negative to the celiac panel blood tests and a couple of years ago to biopsy. However my family history (half of my Mother's family are celiacs) and symptoms, which are responding to the gluten free diet was enough to convince my rheumatologist of the diagnosis. He is a lupus specialist who is used to diagnosing lupus and similar autoimmune disorders on the basis of symptoms which are not always reflected in the blood test results, and was willing to accept that celiac disease may also present in atypical ways. Not all doctors will do this.

Also biopsies do not always find the damaged areas, which may be patchy, or the damage may be further down than they usually look with the endoscope. Doctors also dispute amongst themselves what level of mucosal damage qualifies for celiac disease.

There are also medically proven neurological forms of gluten sensitivity, which, in may cases, do not cause any damage at all to the digestive system. If you search the internet for "from gut to brain by M Hadjivassilou" you can see more details. He is a well-known neurologist based in a celiac centre in the UK. The whole article is payment protected, but a non-printable slide show version is available to read.

I would therefore not be too disheartened about a failed biopsy, and consider whether to judge your tentative diagnosis on whether you respond to the gluten free diet or not.

If I sound a little cross about this, I am as the gastroenterologist who biopsied me 2 years ago told me not to worry any more about celiac disease as I didn't have it. As a consequence I have suffered another 2 years of rapidly worsening health, which is only now starting to resolve on a gluten free diet. I am convinced that a little more humility and willingness to accept that there is still more to learn about gluten sensitivity and a little less pompous certainty amongst many in the medical profession would go a long way.

i dont know what to eat anymore i keep cutting out things i dont eat breakfast cause i cannot eat fruit eggs wheat obv dairy any form of sugar no nuts nothing oily nothing fatty! I do not sleep at all i am depressed like crazy i cry all the time. When i start feeling better i try differnt things like certain vegetables and i get gassy. I do not like to go out to much because i am scared of the embrassment that i used to have before. People talk about my skininess all the time and apparently now they are saying i am on drugs. I do not even care about that at this point i just want to feel better. My head hurts all the time my muscles were like throbing/jumping last night usually they hurt so bad when i eat any kind of sugar or anything i am sensitive to. Keep experiencing new symptoms. And the non stop D and gas i just want it to go away i do not know what to eat. I feel like everything is making me sick again i hate my life i cant do this anymore. I do not have money for a nutritionist now. I think even the natural gravy from the meat makes me sick because of the oilyness same with the oil from the salmon and the skin but ohhh i cant stand plain rice and chicken but i guess i have no choice. I feel like even that gives me gas but apparently it could be anything i don't want this anymore im tired of this i can't live like this i want my life back i hate the cravings and i hate food i stopped eating i only eat like 2 times a day now i was gaining weight finally now i look anorexic again my legs are like sticks.

Dear Chrissy

You know I logged on thinking of asking pretty much the same question as you. I too am having trouble eating anything, and am fed up with eating the same small number of foods all the time, and still feeling tired and nauseous and no appetite. However I am managing just about to keep the D at bay most of the time. I have only been gluten free for 4 or 5 weeks. I lost weight hand over fist for the first 2 or 3 weeks, then it stabilised as I started to be able to eat more, then last week I think I got glutened and it all kicked off again, so now I am back not being able to eat etc etc.

Anyway what works for me while while things are bad is to avoid anything fatty or oily, including salmon when things are really bad, and to rely on a few very plain and simple foods. I have been making a lot of soups (I call them soup but it is really just boiled veggies pureed up in their water), maybe with a boiled chicken breast chopped small thrown in at the end (don't puree the chicken breast as it is yukkie). The advantage of soup is that it is good nutrition which is also easier for a damaged digestive system to process. I also boil quinoa with chopped chicken breast, diced sweet potato or swede or something to get some sweetness, and peas up in one pot for a filling meal. Breakfast is more problematic as the options are more limited. So it is either more soup, or a gluten free porridge made with water (where I live there is one based on rice and buckwheat flakes) or gluten free rice crispies (chex?).

Anyway all that is a diet which is only suitable for a short term problem, and cannot sustain anyone for more than a few weeks at most. You have obviously been struggling with this problem for much longer than I have, and it if isn't settling down despite your best efforts to avoid gluten and other trigger foods, I really think you should go and see your doctor as soon as possible. Forget the nutritionist, as I see this is a medical problem and not one where diet advice can help. There are other medical conditions which have similar symptoms to celiac disease, and having celiac doesn't rule out you maybe having both. There are also instances of celiac disease not responding to a gluten free diet. Either way, you may need further medical advice and possibly treatment. There are other members here who will also mention cross contamination issues which can cause continued problems and this is also perhaps something to think about, but please do see your doctor as well.

Love2travel - I am sorry you are suffering such pain. It really makes things hard. I see from your signature that you developed conditions which are not as fixable as mine. Most of my spinal pain after the accident was alleviated by physical therapy, but I didn't really get a grip on it until I found a PT who adapted pilates exercises, and this has been something I have kept up, with just my neck/head remaining stubbornly painful. However this year I developed shoulder problems and systemic inflammation which I now know was worsening celiac symptoms. These problems prevented me from obtaining any benefit from exercising, no matter how gentle, as I was just too sore and stiff. I hope that soon I can get back to it, but don't feel up to it just yet.

BTW I saw on another thread that you spend time in Croatia. We went there on holiday this year and loved it! It is just so beautiful. Best wishes.

Just to confuse everyone, I had just posted a comment similar to this in another thread. My reaction is perhaps the opposite. I had a longstanding chronic headache around the base of my skull prior to going gluten free which vanished within 24 hours of the new diet, and has not returned. Still getting some sinus area pain and very mild tension type headaches, but nothing major. For me, what I take to be withdrawal symptoms are purely digestive and skin related.

I had suffered from chronic pain in my neck and around the base of my skull since a car accident some 9 years ago. This pain vanished 24 hours after going gluten free and has not returned. A recent blood test had also shown post-menopausal levels of estrogen (the level was extremely low). My cycle restarted shortly after going gluten free. I also haven't had any migraines in the last month of being gluten free, which I had also not expected.