my blood tests have come back negative for coeliac

[neartenby]

and I'm not sure how to feel about it. Relieved or anxious because I still don't know what the problem is. I've been GF for just over a week and while the pain and vomitting has gone, I still have terrible bloating and wind, pretty much every time I eat anything at all! And I still get pain when I've eaten certain things (bananas and UHT milk of all things! oh and I accidentally ate some MSG that made me feel horrid).

I have an appointment to see my GP on Monday and I have no idea what to say to him - how to proceed. And I know that if I'm not prepared I will end up having it brushed under the carpet.

Any ideas? ANy literature I can read and/ or take with me? Do you think its worth pressing for the biopsy anyway? I have hashimotos and various 'usual'allergies (hayfever, animal fur, dust, penicillin) so I think I have a case for saying this could well be food allergies. I want this sorted. i feel terrible, and I'm quite afraid with the speed with which my symptoms have gotten worse

[ostrich]

Yikes! Well, since you said you have other food allergies, I would first suggest an allergy test (you know, those little pinpricks on your back). If they don't react then they're not true food allergies, so you might have something going on with your digestion. That's what they did to me when I mentioned I was allergic to oats.

Otherwise, I would tell your doc all the same things you just posted. If s/he tries to brush it off, just keep insisting that you know something's wrong, especially since your symptoms have gotten worse. Hope you feel better soon, and good luck!

[cruelshoes]

Have you tried eliminating dairy? Your symptoms could also indicate dairy intollerance.
_________________
-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

[Kathie]

Check some of the other threads and you will see the diagnostic info you seek, or when AL or TEC stop by they know all that stuff.

It took me a year being GF before all of my symptoms went away and two weeks of prednisone to kick start my system when I wasn't gaining weight after a few months. I was also lactose intolerant the first year.

To understand what is going on inside you in lay mans terms (as it was described by a good doctor I had back in the beginning), villi are little finger like projections in your intestines, there are a kazillion of them. They increase the area of absorption because of course they can absorb on the whole surface of each of them. Gluten destroys the villi making the lining flat or stunts them, this decreases the area in which food can be asborbed so basically we are starving our selves. It also causes food to spoil or ferment in our systems instead of being digested causing the gas, bloating, foul smell etc. There is also a decrease in the enzymes needed to digest food, which is why many of us are allergic to many other things, at least in the beginning until they regrow.

If you are starting to feel better I would not let it drop. But in order for it to be accurate you need to get back on the gluten. When I was diagnosed there was no blood test, just endoscopy and I had to have two in a months time because the first time they didn't take large enough samples, and a large enough amount of samples.
_________________
CD by Biopsy 3/25/88

[Noatak]

Don't assume you don't have Celiac because of a negative blood test. Hashimoto's and allergy problems? That's me also and I definitely have Celiac's! A better test for you to insist on would be the genetic testing....HLA testing. Biopsies are not always definitive either but your DNA does not lie.
It would most definitely rule OUT Celiac so you would know for sure.

Non-Celiac gluten sensitivity could be the problem and would explain the negative test result. The bottom line is that if you are feeling better enough to notice it without gluten in your life, I wouldn't start eating it again. Go for allergy testing, to be sure, but don't let the doctor blow off on the gluten problem! Good luck and I hope you feel even better soon!

[aklap]

Hi Near,

Do you know or did you tell us what tests were run on you? Many docs will only run the tTG test - which is the latest greatest test. BUT...that test is looking for villi damage. If there is little or no villi damage - that test will come back negative. Thus, allowing the doc to tell you, "No Celiac", and you still feeling like cr@p The reason they can do that is because by today's standards CD = villi damage. It's sad because villi damage is considered end stage for this disease. Why must we wait for for it to get that bad before something is done about it?????

The full Celiac Panel is prefered because it can also detect Non-Celiac Gluten Sensitivity. However - this is something that many (unenlightened) docs don't know about or believe in.

Yup - dairy would be the next thing to remove. It's very common for dairy to cause issues like you are having.

You could also have multiple food issues. This too is very common. Now that gluten have been removed, you are noticing other foods that cause problems.

It's also not uncommon for it to take awhile for you body to get rid of all the gluten in your system and for it to "right itself".

Keep up the research!! You're the only one that will look out for you!!

Take care.



A complete Celiac Blood Panel:

antigliadin IgA and IgG (May indicate Non Celiac Gluten Sensitivity)
anti-tTG and/or anti-endomysial (Looks for villi damage)
total serum IgA (rules out IgA deficiency)
anti-reticulin IgA (Rarely used but, a very thorough doctor will include this)

More on Diagnostic Testing
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[aklap]

Oh yeah...MSG...in some people it will cause problems. Many stay away from it period.

It's good for causing headaches...

While it's GF in the USA, China it is not (maybe other countries too).
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[neartenby]

its was the ttg test. Thank you so much for your replies. I've decided that if nothing esle, I will certainly do the the elimination diet.

I'm sure its a digestive thing. But in addition to the digestive reactions I also get mouth ulcers, aching and painful joints and bones (especially hips and knees), sore ligaments in my feet (especially the toes and arches), thrush and I'm so bloody tired all the time. I've also been a clinical depressive since my teens [on and off medication]. Do any of these symptoms ring any bells for anyone? It would be great to have somewhere to take my research next!

I did have a vega test about 7 years ago but was told that I was intolerant to wheat, yeast, sugar, cheese and chillies. Given they made up 90% of my diet I did some reading and convinced my self it was a load of hokum. That may have been a mistake.

[aklap]

[neartenby]

eh? even the feet? I just threw that one in because I've always had periodic trouble with them but they've flared up badly the last week or so. If I get up quickly after sitting or lying down for a while and step heavily they are agony!

My tooth enamel is eroding too. I put that down to breastfeeding for 4 years but perhaps not.

and sometimes I have SSRI withdrawal symptoms (vertigo, nausea, a crash in my mood) even though I've taken my meds. Which is what started me down this route.

Sigh. I feel like such a hypochondriac. Which to be honest I am one of those too. Which makes it all worse - people tend to think I'm exaggerating

[aklap]

YES FEET TOO!! You may have peripheral neuropathy (PN). Do you know if your B12 levels were checked??

Eroding enamle...oh gosh...again...CD related. I really would push to get this figured out!! I'm not trying to scare you...

You are not crazy or a hypocondriac...i would venture to guess it's the gluten!!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[neartenby]

my B12 was ok. I'm anaemic again though (not as bad as I was a year ago, but I was still prescribed iron sulphate).

I have about a quarter of those symptoms. Bugger.

[neartenby]

I'm really sorry to be a nuisance, listing my symptoms like this - but one of the things that bothered me most (given its associations with cancers like lymphoma) was my periodic night sweats. It says in the symptom list sweating - would that cover the bed linen drenching night sweats?

[Noatak]

I have been reading this exchange between you two and my eyes are getting bigger and bigger! Neartenby, let me list my lifelong symptoms until diagnosed at age 46 last year.....mouth sores at times, that took awhile to heal, anemia, tooth enamel erosion (which is costing me a damn fortune to fix!), aching finger joints, extreme fatigue, and yes, thrush! I went on a candida (yeast) diet twice in my life and felt amazingly fantastic but a yeast scavanging diet cuts out most of the foods that are a no-no for a Celiac. Since diagnosis of Celiac, I now wonder if I had a yeast problem at all or did from the damage to my intestinal tract. The two often have interchangeable symptoms. It really doesn't matter at this point as since my dx with Celiac and following as GF a diet as humanly possible, all the above symptoms are gone, gone, gone!

I never had the extreme gastro problems until the end, when my intestinal tract was fully engulfed. I had a few over the years with pain and bloating after meals but just couldn't connect it all. In the end, I figured it all out myself in a light bulb moment and went and had the Celiac panel done. My Ttg test was way over 100 and the others were positive but I was very sick at the time of testing so a positive result was a no-brainer!

Please pressure your doctor about this and don't let up as it certainly sounds like you have a good chance of having Celiac. Oh, yeah....I know I probably have some nerve damage as my hands can go numb in the cold weather but I'll be damned if that'll get me down. I am so very glad I finally know what the problem is and the diet is not bad at all....once you get the hang of it and develop an arsenal of food suppliers!

As Al said, not trying to scare you or anything as there is nothing to be afraid of if you are Celiac. This forum is a lifesaver when it comes to food and advice so keep us posted as to the outcome.

[Noatak]

Darn!!!!! I forgot to add something about your nightsweats.....I don't mean to pry or be too forward but those usually signal peri-menopause or menopausal symptoms so are you in the age group for that to be a possibility? I was hoping mine were from Celiac's but no such luck!