Can you have celiac but negative blood tests? Is it that uncommon?

[WK1010]

Hello everyone. I'm a 19 year old male. Not too long ago my blood test showed RF latex test > 450, which I have read indicates advanced disease. I've read a bit about rheumatoid arthritis and diseases associated with rheumatoid factor, but none, I think, match how I'm feeling. I don't think I have RA, as I don't really complain of joint pain. IgM was also 2.8, slightly elevated. Celiac disease blood tests were negative and the doctor think celiac is unlikely. I was referred to a gastrologist and now have to wait months for the appointment while suffering from:

- Fatigue

- Daytime sleepiness

- Memory issues

- Concentration issues

- Never feeling awake, can't think straight (brain fog)

- General muscle aches and weakness

- Excessive flatulence (near constant!)

- Changes in bowel movement (bowel movement every other three days, or once each day but incomplete, much straining. Stools are very fatty / shiny and hard to flush)

- Moderate numbness and tingling in hands and feet that I feel all the time.

- Difficulty swallowing (mucus stuck in throat, food getting stuck in throat, need water to flush down. I do have acid reflux, but am being treated with pantoprazol.

- Loss of appetite. I only eat because I know I have to. I eat quite alot, but don't really feel like eating.

Main bothersome symptomes are: Fatigue, daytime sleepiness and flatulence, because I've had them for about 5 years, and these symptoms are getting worse each year.

I also have lactose intolerance which I have read can be caused by celiac disease, but then again the blood tests were negative?

If anyone has any input, or can relate, please feel free to respond

[Hidden]

hi there - you really could be describing my symptoms. I had a few celiac blood tests over the years (symptoms since my teens, I'm now early 50s) but all came back negative so I dismissed it. Finally nearly a year ago a good GP referred me to a consultant who referred me for a biopsy (he was lovely and very thorough but was convinced I would be negative for coeliac). It came back a (very) conclusive positive. So I would persist. Check that the blood tests they did also checked to see if you are IGA deficient - if you ARE, your celiac tests will come back negative even if you have the disease (I assume this is what happened with me, though have yet to confirm that). All I know is that I finally have an answer - and though i can't pretend never drinking a pint of beer again is my idea of fun, I am nevertheless delighted to know what's going on.

Here's a link from the coeliac uk website which is a better description of the whole IGA thing, and may be worth taking into your GP.

coeliac.org.uk/coeliac-dise...

Really good luck, it's miserable I know.

[WK1010 in reply to Hidden]

Ok so it is still possible. Immunoglobulins were measured. Only IgM was slightly elevated. Thank you for your support

[Penel]

Unfortunately it is possible to have a negative blood test if you didn't have enough gluten in your diet before the test.

If you are wondering about RA, perhaps post a question on the HU site?

[WK1010 in reply to Penel]

I don't think I have RA. I only wonder what could cause the elevated rheumatoid factor, along with my symptoms.

[Lisahelen]

Have you had bloods with b12 done? Very similar symptoms.

[WK1010 in reply to Lisahelen]

Yes, I have several times. The results were normal and within good range.

[glutenfreemumuk]

Hi, sorry you are feeling so poorly. A lot of your symptoms sound like sjrogrens, another auto immune disease. There are a few things online about diagnosing sjrogrens. It is just a suggestion. Good luck.

[WK1010 in reply to glutenfreemumuk]

I have read about sjorgens syndrome. I don't complain of dry eyes and dry mouth, though. And is it likely for young males to get sjorgens? I'm not sure. It could be a possibility, I'll admit.

[kaspa]

Hiya, I sympathise as I'm similar and negative.

But taking gluten out of my diet has made me feel so much better. And I now completely avoid it.

Have you tried?

the bloating disappeared and gut disturbances faded out and I can now think better.

so my advice is try it. You've got nothing to lose

Hope it works x

[WK1010 in reply to kaspa]

I'm glad it worked for you. I tried it for three days once, but felt worse, so I stopped. I don't think I should go off gluten, because if it is really the cause of my problems and I stop consuming gluten before the endoscopy I might have then everything will seem normal and I won't get a diagnosis. The diagnosis is important to me. I need to be sure why I'm feeling like this.

[kaspa]

yes that's really important. Hope your wait is soon over.

[Patcy2468]

Hi babe the only way you will grt a possitive diagnosis for coeliac disease is to eat loads gluten & suffer the horrible nausea feeling like death & never far from the toilet but dont do what my twin done & went gluten free becouse it took for ever to get a right result sorry to be blunt but dont make it harder for yurself my sister suffered reflationary coeliac hit & miss becouse she had strong antibodies & went gluten free take care patricia

[WK1010 in reply to Patcy2468]

Yes, that's what I'm saying. I should wait and not go off gluten. Btw I've got a twin too!

[Ummijan]

I'm getting blood test results today. I hope they're conclusive. I've only been off gluten for 3 and half days but I already feel a little better, not much but I've not had any days this week where I wanna give up on the world so I think that's a step in the right direction. And I'm finding it a little easier to think and remember stuff which is nice, I'm hopeful that I'll feel more like me again soon. I'm still prone to short bouts of melencoly but I've got more control or awareness of my rages and they're much less often. I feel better today, waking up, then I've felt in years. It's mind blowing. But no idea what tests will say.

[Ukbusybee]

Hi there. I had similar symptoms that seemed to develop over a few years. I was tested for numerous things (including celiac) but all came back negative. I knew it must be linked to food because I also used to have a cardiovascular response after main meals. Docs weren't really getting me anywhere. Although controversial I actually paid to have a full food and drink scan for intolerances. I had positive IGg immune intolerance results for eggs, milk, wheat, gluten, millet, yeast, crustaceans and coffee. I'm also borderline intolerant to another 7 items. I also suspect I have a true allergy to molluscs. I cut all these food groups out and felt much improved after just 3 days and fab after 2 weeks. Maybe something to consider?

[appletina]

YES