Gluten free for 3 weeks even after bl... - Gluten Free Guerr...

Gluten Free Guerrillas

9,718 members3,967 posts

Gluten free for 3 weeks even after blood test results were normal.


Doc gave me blood test for celiac and came back normal. Should they be tesring me for anything else before diagnosising me with ibs? Other symtoms including constant nausea which has actually eased a little this week. I put myself on a gluten free diet as I didn't get any advice for ibs other than contact MIND for my anxiety. I only get anxious as I feel like I am going to be sick or need the loo! Bowel habits have improved slightly, still frequent but more normal. Pain inbetween shoulders, usually in the afternoon to evening. And I have been having strange cramps in my legs? Anyone else get this? My knees are quite fragile and hurt in the mornings. Doc didn't seem interested in any other symtoms. Sorry to have a moan, just like to share with the gluten free community.

12 Replies

I Would seek a 2nd Opinion if i were you. Good Luck :)

Hi S-unrise,

You don't say if you have had the camera up or down yet, this seems to be the normal process. I think the medics use the "IBS" answer because quite honestly what you are going through must be quite difficult to find a definite answer and treatment for you personally.

If your joints (knees) are fragile you could ask to see a Rheumatologist and try and get a definitive prognosis and treatment for that condition. You may find trying to walk for 15 to 20 minutes every day could help to keep you mobile and keep your muscles working.

If we look at the state of the NHS and the pressure GPs surgeries are under, it will be the norm to go and see your GP for answers but I have found that once I have exhausted the GP process it makes more sense to look at self treatment as far as pain is concerned, but you need to get as much professional help as you can first.

I find that it is far too easy to get angry and hung up on the whole process of your own situation and you can end up in a downward spiral which is a bad place to be and end up. You may find it easy to look at bringing humour into your very own treatment for your pains, this is the only way I have found to help my Arthritis pains to be more bearable. I have a major problem with ANY pain management drugs and can end up with Anaphylactic shock which is a dangerous place to visit! There is a move to pain clinics in various parts of the world using this technique with astonishing results and research is beginning to be gaining positive results. I find that if I record comedy shows off the TV and at times of bad painful episodes sit relaxed and try and immerse myself in the comedy it give quite a lot of relief!

NOTE, You must get as much professional advice as possible BEFORE ANY SELF TREATMENT and ask for second opinions if you are not happy at any stage of your personal journey.

Beat of luck

Hi S-unrise - it seems that in the main coeliac disease is the only gluten illness that is recognised. There are other gluten illnesses. Sometimes people who have bog standard coeliac dont get diagnosed for many years - because they are looking for damage to the gut - enteropathy to diagnose CD. you could therefore have CD but wont get a diagnosis until you show enteropathy if you continue eating gluten! It is now being shown that gluten can affect other parts of the body as well as the gut, but supposing you have undiagnosed CD then you will be malnourished because this causes vitamin and mineral deficiencies - have you had things like this tested for ? Im thinking anaemia, b12, vit E and D for example - you could ask for these. vitamin deficiencies can be the cause of aches and pains.

You can also ask for tests of gliadin antibodies to be done - or get them done privately, also transglutaminase 6 (TG6) which may be available or not yet but is being shown to be a good indicator of gluten ataxia.

I think the bottom line is do you feel better on a gluten free diet? i think you need a few months to be sure but I knew straight away that this was the answer for me. If you feel better then you have to make the decision are you going to continue with the gluten free diet or not and if not then eventually as you will continue with the damage (enteropathy) you may get a diagnosis of coeliac. Or if you feel better jut stop eating it without a diagnosis but you will feel better if this is the cause!

Pain between your shoulder pains can be a symptom of gall bladder problems such as stones and can cause stomach and gut problems so have this checked if you havent already - there is some evidence of association with gluten illness and gall bladder illness too.

You could still have celiac disease because the blood test isn't 100% at picking up on the disease they would have to take a biopsy of part of your intestine to confirm it hundred percent I am sort of in the same boat I get joint pain when I eat gluten and my neuropathy in my feet gets worse and mainly I get pain in both hands once I eliminated gluten and milk both all of those symptoms subside. On u tube John Bergman says to do this if you have arthritis or suspect you do. I am gluten and dairy free and no more pain! You might check out his videos.

Hi there sorry to hear your gp isn't too interested. My son started with nausea and abdominal discomfort. He was eventually referred to a paed gastro specialist who was convinced he didn't have coeliac disease. Here in the UK doctors use 2 blood tests Endomycelial Antibodies and TTG. My sons Endomycelial antibodies test was always borderline and TTG always negative. The paediatrician said he couldn't have coeliac because the TTG is always positive in coeliac disease. His symptoms continued so he eventually had an endoscopy. The doc said everything looked normal but when the biopsy result came back a week later it showed villus atrophy in the duodenum. He was not anaemic and had no vitamin or mineral deficiency at all. So just because your bloods are normal doesn't mean you don't have it. I agree with previous comment and think you should get your gall bladder checked out. The trouble with going on a gluten free diet is that you can psychologically trick yourself that you are better. We thought about doing that with our son. The paediatrician was dead against it. Also if you had a marked improvement you would have to eat gluten twice a day for 6 weeks prior to a diagnostic endoscopy. Can you go back and see a different gp? One that is more likely to be more supportive and helpful? Good luck.

Jacks in reply to Kikideelili

Not all villius atrophy is coeliac disease - my friend had Giardiasis, symptoms just like coeliac disease but he had a very nasty parasite instead! No wonder his bloods came back negative.

Thank you for your kind replies. I actually did have a endoscopy a few months ago but not for colieac. I was having heatburn/indigestion on top of the nausea. I hadn't actually told any doctor about my bowel habits, been having quite loose bowels in the mornings for over 3 years, was just trying to deal with it as it's a little embarrassing. Doc put me on omerprazole for a few months and organised an endoscopy to see if I had an ulcer/hiatus hernia or something, they did take a biopsy but that was to test for a bacterial infection (can't remember the name of it) but that was negative and no sign of ulcers or anything. When I went back to doc she wanted to give me more omerprazole but I didn't think it was making a difference as I was still getting heartburn etc. That has eased recently but pain still in my shoulders and neck, also yesterday my jaw clicked kind of out of place and it hurts a little to chew. Even though the endoscopy wasn't to look for colieac, wouldn't they have seen something anyway? When the endoscopy was clear I told doc about my bowel problems and how I got dizzy and stomach pains at work recently, it was then they did a blood test to check I haven't got coeliac diesease and bloods came back normal (whatever that means) . I mentioned the shoulder pain and they have sent me for xray (awaiting results) but I really don't think they'll find anything skeletal. Lickylicky are you positively tested fot celiac? Kikideelili- sorry your son has coeliac, how is he now? Are you gluten free too?

Oh and thanks forvthe info on gallbladder, I'll mention that to doc.

I've been told by my GP and a few friends with IBS that a gluten free diet often does help but nobody really knows why. I also have a friend who has been tested many times for coeliac disease and it always comes back negative but they keep testing him for other things. The NHS website has a lot of useful information about IBS so it might be a handy resource for you to see what they recommend to help relieve your symptoms, the. If that doesn't work go back to your GP and demand a second opinion. I have a friend who has convinced himself he's coeliac because his symptoms are similar to mine, but test after test has come back showing he isn't so I definitely would steer clear of self diagnosing. Good luck.

Get checked for abnormal thyroids and auto immune problems.... My mum has all these symptoms.. although you can have these symptoms for years before they can be identified as thyroid/immune problems... Stress is a main cause

I am gluten/lactose/preservative intolerant, I also suffer from anxiety and stress

Some doctor think I may have IBS or be celiac but I can't test for them as I have been on a strict clean eating diet for 5.5 years....

Most recommended relaxation techniques don't work for me, although I've recently discovered mindfulness techniques. Feel free to check out my post on it, the link is:

Hi Jacks

That is very interesting! I did not know that other things cause villus atrophy. My son is doing really well on a gluten free diet thanks s-unrise. I am not gluten free just wheat free. I do like the occasional bottle of Bud and I like Ryvita so still eat Barley and Rye but very little. My husband tried to be gluten free too to support our son but only at home. Interestingly also Jacks my son has an immunoglobulin M deficiency which was picked up incidentally by our GP. The Paediatrician said it's not unheard of in Coeliacs.

You may also like...