Not celiac, blood test fine, eating no gluten and wheat, still horrible physical symptoms?

Digestive health
1

Hello everyone,

 

I am 21 year old female, very active, eat right. 

I went for a blood test a week ago to check for celiac and low thryoid but everything is fine. (I had only been eating gluten about a week before my test)

One day I had some cake, and around 4 hours later my scalp was extremely itchy, so was my skin, I was light headed, felt sick, lips got a bit swollen and I had chronic diarrhoea (must have gone about 6 six, great amount of water loss too)

I had a few biscuits one day, and the chronic diarrhoea occured again, the same with a subway sandwhich.

So I did a bit of research and cut out wheat and gluten. Felt fine. My stomach started getting bad with cows milk too so I changed to almond.

I went for my blood test and everything is okay, I've not been eating gluten or wheat. I had some lactofree milk the other day and I have still got the remenants of diarrhoea. I just don'get get what is wrong with my stomach. It hurts all the time. But my results show I am okay. 

I used to be FINE with no food problems

Please help!

Any advice would be much appreciated

Sydelle x

2

Sorry, to hear that you're feeling so poorly. I was like that before being diagnosed when I was 18 (I'm 21 now)

Have you heard of something called histamine intolerance? I have that as well as coeliac disease. It's kind of hard to explain, but you could google it and see if your symptoms fit. They seem to as there are a lot of skin complaints, as well as digestive- like an allergic reaction. 

If it seems possible, it's something worth discussing with your GP/a dietician. 

I've had to go on a 'low histamine diet' because of it, which does limit dairy and gluten (though I'm completely gluten free anyway) and other high histamine foods such as certain fruits, tomatoes, spinach, chocolate etc. 

Have you had an endoscopy before? That's what I had to officially confirm coeliac disease as often the blood tests come back with false negatives, though an endoscopy wouldn't be effective of you hadn't been eating wheat for awhile (they generally say 6 weeks, same as the blood test). An endoscopy could confirm/rule out something. They could also find damaged intestines (not necessarily caused by gluten) which could be the cause of some of your symptoms. 

But definitely have a look into histamine intolerance (similar to mast cell activation disorder) as that seems to match your swelling and itching symptoms. Have you tried taking an antihistamine to relieve the itchiness/swelling before? 

Sorry it's a bit of a ramble, but I hope this helps! smile 

3

Hi Amy,

thank you so much for your reply!

Funny you mention itching, I get really itchy skin when I walk past certain plants haha! 

I will have  a look at that! 

No I have never had an endoscopy. Shall I go back to the doctorssmile? 

Thankyou :D x

4

I do too! It's not just food with most people who have histamine intolerance, it's perfume, plants, washing powder etc (but mine is generally food!)

You could ask your Dr if there are any other tests you could have, or if you could have an endoscopy. Just because your test came back negative, it doesn't mean that you don't still have gastrointestinal issues! So the GP shouldn't just give up. 

Perhaps you could try and keep a food diary, or at least write down what you ate/drank when your symptoms were bad, so you may be able to narrow down exactly what it is. 

smile 

5

I was 21 when tings went pear-shaped for me but I only heard of CD last year or that was the first time i really became aware of it.

Yes, it's an endoscopy you really need despite the blood test and they shouldn't have fobbed you off so soon.

6

I think you should definitely ask for an endoscopy, it could be a false negative because you only ate gluten a couple of times before the blood test. Also with such extreme symptoms you should be checked for a range of other conditions such as colitis and crohns (not a nice thought but you need to know what's wrong.)

My diagnosis of having coeliac disease has only altered my health in that I now know for definite that I am doing the right thing by living on a gluten free diet. I think even without that label I would have continued to eat gluten free because I'd noticed a difference in how I felt.

I would ask for more tests, keep a food diary so you can assess any links between the foods you eat and your symptoms.

Keep at it. It took me a long time to get any help with my stomach problems, I was in my early twenties too, and I think they kept seeing a young healthy girl and sending me away with a "see how you feel in a few months"...

Good luck!

7

I agree with the others on here, you need to go back to the doctor! 

As others have said, If you stopped eating gluten before the test it would not work, or if you were not eating enough gluten.This applies to the blood test and the endoscopy. There is also a gene test but not widely available. There is a second blood test you can have, but that would not work if no gluten in the diet. One week may not be enough, I think 6 weeks is recommended.

Coeliac disease can start later in life, triggers are not understood. The good news with coeliac is you can get well by changing your diet !

Sometimes coeliacs are also dairy intolerant but this can improve once they have been on gluten free diet for a while.

I hope you get sorted out soon, it sounds to me that the blood test was not correct as you were not correctly advised that you should eat sufficient gluten prior to the tests.

IMHO your symptoms after eating gluten are very dramatic and you should go back to the doctor to discuss what to do next. It is a difficult situation because you have to eat the gluten for the test to work, but the gluten is making you ill.

As others have said, if you keep a food and symptoms diary it may help convince doctor you are coeliac without the tests, or at least get a referral to gastroenterologist, who may diagnose on the basis of symptoms rather than the tests. 

You should check the Coeliac UK website, and you could phone their helpline. Don't be fobbed off, from what you say in your post it's likely you are coeliac but you should not be too worried, apparently so is Novak Djockovic and he just won Wimbledon! (He says 'gluten-intolerant' but it amounts to the same thing.)

If it turns out you are not coeliac then the doctor should investigate other causes, but if you are coeliac the good news is that you will probably make a good recovery and be able to stay active once properly diagnosed and following the diet.

My brother is keen cyclist and has always eaten very healthy diet. He had great difficulty getting diagnosed as he appeared in good health.

It's best to get a diagnosis rather than going it alone as they can also test for related problems such as early signs of osteoporisis, which can be treated, and aneamia, and you can get prescriptions for gluten free bread, pasta and flour, which is otherwise very expensive.

 

8

' I was in my early twenties too, and I think they kept seeing a young healthy girl and sending me away with a "see how you feel in a few months"...'

Hmm, I think so too but hope not. I have lost 23 years to their incompetence, I hope you young women fare better than I did.

9

Also, please eat gluten for 6 weeks asap. The sooner you do it, the better. You are still young and this will make such a difference in your life. I have lost 23 years - what's 6 weeks compared to that? Obviously, if you are sitting an exam right now or some other important event, just schedule the 6 weeks when you can but THIS YEAR!

10

thankyou so much Rachel, I will definitely do this!! Glad you're well now x

11

Thankyou Gillmm, I really appreciate your answer so much. I will carry on eating gluten from now on and then book another test in about 6 weeks. 

Thankyou so much!! x

12

Definintely will begin right away!

Thankyou Rachael smile x

13

You only need one good doctor who wants to get to the bottom of things for you. I had been going to the doctors with stomach complaints on and off since I was 17, and finally got diagnosed this year aged 24. Eventually it took my mother coming with me (which is quite embarrassing) to one appointment, last October, and saying very firmly that she was sick of watching me suffer, for them to send me for further tests.

 I was wheat free but not gluten free, I'd actually never heard of coeliac disease. Once I got the positive blood test, the ball started rolling very quickly. I had an endoscopy that January and was diagnosed in March. I've now had an appointment with a dietician, and have had a blood test for nutrient deficiencies. I'd definitely eat gluten for six weeks then try another test. There is a lot of help available from the NHS once they know what's wrong with you. But they seem very reluctant to send people for further tests, I suspect it's a funding issue. You can request to swtich doctors, if you want a second opinion. I had a doctor tell me that my symptoms were so vague, that they were probably stress related or all in my head. If I'd believed him, I'd still be ill now.

All the best of luck with getting the right diagnosis and getting well again. Whether it turns out to be coeliac or something else, you need to know what you're dealing with to treat it!

Rachel x

14

I took my reluctant mother with me to a smear test because they hurt so much. The nurse wrote to my doctor recommending I be referred to a gynaecologist. I suspected I had endometriosis and I was right but I had to make the doctor read the nurse's letter out loud and when it said 'refer to gynaecologist', I said: yes please that would be great.

 

15

Hi Everyone... I say just trust your instincts..I thought I was coeliac but my blood test came back as negative.Doctor said nothing wrong. Went to see another doctor.. did more blood.. nothing wrong Again. Not satisfied saw another doctor did blood test came back highly positive. The Morall of the story.. dont trust your blood tests fully. I went to 3 different doctors and by coincidence they all used different labs .2 labs always produce negative bloods while another always produced poitive results( I did more blood tests at the same time just to confirm this). Different pathology labs use different test kits and I found out the one that gave a positive result was a machine type of test where there is no human input, whereas most kits pathlogist use they need to prepare and look at slides and also use different reactants to get a result. So biopsy done and was positive!

Never give up..trust yourself more than any doctor!!!!!