I Think Its Celiac But Negative Blood Test, Opinions Appreciated

[tallypop]

Hello

 

To cut a long story short I have been ill on and off for the past 3 years but I have digestive problems around 6 years, I am sick of being told everything is fine when I'm pretty certain there is something rather wrong with my body.  

 

Things got really bad 3 years ago, my stomach pain and alternating diarrhoea/constipation was getting worse I went to the doctor and was told I had IBS, my doctor tested me for inflammation markers to try and see if it was a form of IBD, these tests were negative. I was sent home, less than a week later I was back with extreme fatigue and what my doctor said was gastritis (my stomach was inflamed) I also had nausea which was so bad I stopped eating and became underweight. I had to leave university and go home for weeks at a time, my doctors thought it was post viral fatigue, I was tested for celiac disease at my request but the test was negative.

 

I was sent to a gastroenterologist he preformed a  sigmoidoscopy which was clear, I began to feel a little better, not myself but not as bad so I accepted that I had post viral fatigue. My health was up and down but over the next 2 years I began to feel better, again not perfect, my whole body would ache in the morning my stomach was very sensitive, its hard to explain, I just felt "not right".

 

Fast forward to this year, around 2 month ago I got a flare up of gastris again, along with the heightened fatigue diarrhoea, nausea, headaches ect. and had to be medicated again, what changed? Well I moved home and began working in a Italian restaurant (lots of pizza), it might not be connected but...  

 

So I began having my bloodwork done again, I was tested for celiac again (the nurse said it was negative but I'm waiting on the dr to confirm), the only thing that I was flagged for was iron deficiency which is odd because I was tested when I was eating practically nothing and it came back normal, now I'm eating more my weight is normal and it comes back as deficient.

 

I dont know if I have celiac disease, chances are I probably dont but I cant help but think my symptoms are spot on for celiac, I just dont want to keep having these health problems for years to find out it was in fact celiac all along!   

 

My symptoms are-

Nausea 

fatigue 

Headaches

Stomach pain

constipation

diarrhoea (normally when my stomach feels at its worse)

An all over body ache 

Dizzy spells when I stand up (my vision sort of "goes")

Cold hands and feet 

Pins and needles

Just feeling "not right" 

  

If anyone could shed some light on this I would really appreciate it, I'm going to try and get hold of my blood test results, how likely is a false negative?

 

Thank you for reading my story, whatever is wrong its having and effect on my life and I really dont want to feel like this any-more!

 

Tally 

 

 

 

 

[cyclinglady]

First, do not give up hope finding a diagnosis. Many here have taken decades to find the cause of their symptoms.

Are you sure you had a complete blood panel?

Here is a site from the U of Chicago Celiac center regarding testing:

Open Original Shared Link

This site has lots of info about celiac disease.

Checking your colon will not diagnosis celiac disease. I am sure others who are wiser will post more information. In any case get copies of your test results. You can always post them. Having a formal diagnosis would make it easier for you at school (and family support). Later you might decide to go gluten-free to see if it helps.

Good luck and I hope you feel better soon!

[tallypop]

First, do not give up hope finding a diagnosis. Many here have taken decades to find the cause of their symptoms.

Are you sure you had a complete blood panel?

Here is a site from the U of Chicago Celiac center regarding testing:

Open Original Shared Link

This site has lots of info about celiac disease.

Checking your colon will not diagnosis celiac disease. I am sure others who are wiser will post more information. In any case get copies of your test results. You can always post them. Having a formal diagnosis would make it easier for you at school (and family support). Later you might decide to go gluten-free to see if it helps.

Good luck and I hope you feel better soon!

Thanks I will post them as soon as I get hold of them next week, I feel like I need to be certain it is or isn't celiac disease, I just have this nagging feeling it is, Its so hard having to push the doctors so much! 

[rukh]

I don't see where it says you cut gluten out and payed attention to the result.  if you are suffering as bad as it sounds, cutting gluten out for a little while won't be very difficult, and if you feel better as a result, that's the goal achieved, right?  In my case, it was 4 days before I realized I'd been feeling a lot better for exactly as long as I had been avoiding gluten.  I'm now at several months, and aside from the odd restaurant poisoning....  

[GF Lover]

Hi Tallypop,

 

Have you had your Thyroid tested yet?  And do you have any other Autoimmune Diseases?  If your tests are negative I would still trial the Gluten Free Diet.  I would also pursue the Thyroid Testing and an ANA test for Autoimmune Diseases.  It's great that you pursued testing before try Gluten Free.  So many people find they do well on the diet then need to pursue a diagnosis and have to eat gluten again.  It is extremely difficult to do because all the symptoms come back.

 

Good luck to you.

 

Colleen

[notme]

I don't see where it says you cut gluten out and payed attention to the result.  if you are suffering as bad as it sounds, cutting gluten out for a little while won't be very difficult, and if you feel better as a result, that's the goal achieved, right?  In my case, it was 4 days before I realized I'd been feeling a lot better for exactly as long as I had been avoiding gluten.  I'm now at several months, and aside from the odd restaurant poisoning....  

this is actually not a great idea if you have celiac and haven't completed testing.  very painful and difficult to re-introduce the 'poison' when further testing is required.  although, i'm glad you are feeling better, rukh, there are also other things that could be causing symptoms that need additional therapies/medications.  

 

tally - you said you basically stopped eating the first celiac test you had came back negative.  you need to be eating gluten for you to produce the antibodies that the test measures.  

 

when my doc suggested i should "try gluten free and see if it helps" i had no idea it would make my celiac test negative.  if my endoscopy wasn't so glaringly indicative, i would still be left with no diagnosis - death sentence for moi, i probably would never have followed the diet so seriously..............

 

good luck   welcome to the forum

[tallypop]

Thank you for the responses, I wasn't really eating anything for the first blood test, for the second trying to eat as much gluten as I could! My doctor is back on the 7th until then I wont get a breakdown of the results. I am planning to request a copy of the results.

 

I haven't done a trail because I need to be certain that it is indeed celiac disease, if its not I need to push for more tests, also if I make the switch to the diet I want to make sure I can tell my family that it is because of a diagnosed condition, If I do go gluten free only to find my symptoms not improved then go off the diet I'm not sure they would take me as seriously. For me going gluten-free would be a challenge I will do it for my health if I have celiac disease but personally I feel before putting myself and my family and partner through going gluten-free I need to be sure.

 

If I get nowhere and nothing else can be found I may do the trial   

 

I have been tested for a multitude of illnesses including Thyroid, my fatigue seems to have lessened slightly on high doses of iron but it has done nothing for my other symptoms, I really want to start working out again, I used to exercise 5 times a week, I really miss it.

 

Thanks again 

[nvsmom]

I was going to ask about thyroid testing too. You have many of the same symptoms that I had (fatigue, headaches, Stomach pain, constipation, an all over body ache, dizzy spells when I stand up (my vision sort of "goes"), cold hands and feet, just feeling "not right")and I have both hypothyroidism and celiac disease. My hypothyroidism looked just "subclinical" but after starting meds, I've discovered that it basically wasn't working much anymore. Hypothyroidism can slow your metabolism byt a third so coldness, aches and pains, headaches, stomach issues are pretty common.

 

If you want to double check your thyroid, ask for these test:

• TSH - should be near a 1 despite what ever normal range your lab uses.
• Free T4 and Free T3 - should be in the 50-76% range of your lab's normal reference range. I had a high TSH and felt hypo when mine were in the bottom of the normal range.
• TPO Ab

The dizziness when standing is postural hypotension... Do you get the tunnel vision too? I started a low dose of fludrocortisone (Florinef) to counter that... Almost fainting (from dropped blood pressure) when you stand is the opposite of normal.

 

The full celic lab panel is :

• tTG IgA and tTG IgG - most popular tests
• DGP IgA and DGP IgG - newer test that is good at dtecting earlier celiac
• EMA IgA - tends to be positive once the villi damage is more advanced
• total serum IgA - a control test to ensure you make enough IgA for accurate testing, 5% of celiacs don't
• AGA IgA and AGA IgG - older and less reliable tests

This report discusses the tests more on pages 10-12:

Open Original Shared Link

 

If you go gluten-free without full testing or a diagnosis, make sure you give the diet many months to work. I was still having improvements after 6 months, and there were many symptoms that did not improve until I was on the correct thyroid meds.

 

Best wishes!

[tallypop]

Thank you all for taking the time to feedback, the reason in many ways I suspect celiac so much is because of the negitive impact eating more gluten (working in an Italian restaurant) has had on me. I'm eating pizza probably 5 times a week, its still fairly healthy as its mainly just vegetables, no meat and very little mozzeralla, so fairly low fat but high gluten!

Before working in the restaurant I ate allot of rice and vegetables, I still had stomach symptoms and I still got tired faster than others but it was nowhere near as bad. Pasta also makes things much worse, I used to eat whole grain pasta/bread but it seemed to make my stomach worse so I switched to refined. I always thought that was odd because my doctors told me to eat more fibre.

My wrist and shoulder started hurting yesterday no idea why, I take pain medication most days there has to be a reason why, as soon as I get my results I will post them.

Thanks again

[tallypop]

I am vitamin D and iron deficient, celiac screen was negative and no inflammation markers, so apparently it's just IBS...

I'm going to try and get my actual results today, I think I might go mad if I get told I have IBS again...

[1desperateladysaved]

I had a "crashing feeling" after I stood up.  I had celiac (at the time) for at least 25 years, which likely caused my adrenal glands to be stressed out. When I took supplements to support my adrenal glands, it helped feel better when I stood up.  In order to find my adrenal gland trouble my health practitioner used orthostatic blood pressure. 

 

Your symptoms aren't normal and I would keep trying to get to the bottom of them.  IF the doctors and family members can't support you, I would do gluten free yourself and hope they will come around later.  The forum people can help you to know others having similar struggles. I began with little support, but now my family members are willing to assist me to avoid gluten.  Mine have been able to see differences in my behavior, my body, and my energy level.  I would encourage you  to nourish yourself the best way you can.

 

I have the cold hands and feet thing.  My doctor told me it is Raynaud's syndrome. I don't know if it is caused by celiac or may be caused by other things.

 

When one has celiac they don't absorb nutrients well.  This can cause oodles of problems.  I wish you the best in healing.

 

D

[GF in BC]

I am vitamin D and iron deficient, celiac screen was negative and no inflammation markers, so apparently it's just IBS...

I'm going to try and get my actual results today, I think I might go mad if I get told I have IBS again...

 

As someone who has suffered from undiagnosed gluten intolerance (or maybe celiac) for over 40 years, I feel your pain. I also was told I had IBS/spastic colon but only after a few random tests didn't show anything other than a couple of ulcers when I was 11. I have a feeling it was just about the same as when you're told you have "a virus". They don't know/don't care (?) and in my case decided it was all in my head and that basically this was going to be my version of normal. 

 

My long story is posted elsewhere here so I won't repeat it, but it's been about five weeks gluten-free (with two accidental ingestions that caused me huge grief) and I can't tell you how much better I'm feeling. I had negative results for celiac but with my reactions my GP doesn't care - he said I don't need a formal diagnosis. We're watching my iron as it's extremely low but for the first time in my adult life I feel hopeful. I get extra vitamin D via a therapeutic dosage of supplements and because iron tablets make me ill, I use liquid. Apparently there are shots I can get if this doesn't work well enough. 

 

You have to start somewhere. As I've read in many posts here, gluten intolerance can be just as bad and in some cases worse than celiac, as celiac is sometimes quiet and causing destruction without your knowledge. My reaction to eating gluten is right out front and jumping up and down to get my attention.  

 

This forum has been wonderful for me and for the first time I feel like there are actually others who know exactly what I'm talking about!!

[amandalesswheat]

Hi Tally,

You should check if your doctor tested for IGA count as well as the IGA-TTG test for celiac. My first doctor only tested for the antibodies and not the count. Immunologist tested for the count. I am IGA deficient and therefore the test for antibodies would be negative regardless of if I was celiac.

Hope that helps you.