Celiac? Negative bloods.

[Crispy chick]

Hi. I'm new. Just looking for some thoughts. I am early 40s, female. My sister is celiac. I was diagnosed with IBS 20 years ago. 

For the last 18 months I have been suffering badly with the following:

Nausea

Dizziness 

Lightheadedness

Fatigue (very bad at the moment) 

Brain fog

Headaches every 2 days

I have bloating and gas, but I always have had hence my IBS in my 20s.

I had my bloods taken a year ago. Negative for celiac. Should I get the doctors to re-look at this???? 

Many thanks

[cyclinglady]

Yes!  Get re-checked.  Celiac disease can develop at anytime.  Some celiacs are seronegative and need to go directly to an endoscopy to obtain intestinal biopsies.     Some do not test positive to the commonly used screening TTG celiac tests (like me).  Ask for the DGP and EMA tests.  Some celiacs are IgA (Immunoglobulin A) deficient.  This means that any celiac test (TTG IgA) that looks for an IgA response will be invalid.  

http://www.cureceliacdisease.org/screening/

With a sister who has celiac disease, your doctors should screening you throughly.  Keep advocating!  Something is wrong and you know it.  

[Crispy chick]

Thank you for your reply. I have just edited my post to add nausea! Another big symptom. 

Did your doctor send you straight for endoscopy with negative blood results? Or do those other blood tests first? 

[cyclinglady]

He ran the entire panel, but I had a GI consult for a colonoscopy because I had hit 50.  He read my chart and decided to test for celiac disease.  I do not know why I test positive only to the DGP IgA even in follow-up tests.  May it is the Hashimoto’s, who knows?  But most primary care physicians order just the TTG tests which catches most but not all celiacs.  

With your sister having celiac disease, you should ask for the entire panel.  Even if negative on the entire panel, consider pushing for the endoscopy or decide to go gluten free.  Personally, because my hubby had been gluten-free for 12 years prior to my diagnosis, I needed a firm diagnosis.  As it was I really did not have GI symptoms, but anemia.  

[Crispy chick]

Thank you. I think I might just push for the endoscopy if I get negative again on the standard test. I feel so ill and nothing else is showing up. 

If I am going to have to wait ages for endoscopy (I'm in UK) then I'll do a short trial. I too would like a formal diagnosis if I have it though, especially for my kids, so it is in their history. 

 

[cyclinglady]

I just had my kid retested for celiac disease and we are waiting for the results.  Her doctor does not hesitate to test since I have a firm diagnosis.  I can also say that my PCP and GI  never hesitate to check for other AI issues either.  They know that you can develop more than one autoimmune disorder.  Better to catch it early before damage!  

If you get an endoscopy, be sure to do a gluten challenge 2 to 4 weeks prior or your result will be negative!  

[Awol cast iron stomach]

I was misdiagnosed IBS over 20 plus years. I was diagnosed IBS by symptoms only. My cousin is a gold standard celiac. My story is complicated my medical records now state I am NCGS. Overtime my convoluted story it has come to light I am a DH celiac. 

I have always had gi issues My whole life ! Numerous skin rash issues dermatitis etc, and plenty of odd symptoms that I realize now we're celiac. I had your symptoms and many more ataxia etc.

No IBS was found on my scopes. It might not be IBS for you either.

Good luck 

[Crispy chick]

Thanks. I just feel so ill and this has been 18 months. I never considered celiac until 2 weeks ago as twice I have had my bloods tested. And twice negative results. I'm in the UK and I think they perhaps only do the one blood test, rather than the panel that people are referring to. 

Gi symptoms have been a part of my life for last 20 years. They are not the problem in this, it's the lightheaded, nausea, headaches and fatigue that are getting me ?. I can't function. 

I'm just wondering, if I am celiac, should I not be showing vitamin deficiencies?? Or is that just in some cases. My bloods on that always come back clear. 

So I am awaiting this celiac result on Monday. I suspect, as before, it will be negative. Then I'm going to push for endoscopy. 

 

[tessa25]

I did not have vitamin deficiences

[Crispy chick]

Just had my latest blood test. Negative. As expected I guess, but I could cry. I just want an answer to why I feel so bad. 

I asked the gp - that was off one test. I mentioned the panel, she didn't comment. My test was really low though. 1.2. Is it still possible? I'm seeing gastroentology later this week so will now need to push for biposy based on symptoms and family history ?

[cyclinglady]

Your GP is probably restricted or prohibited from ordering a complete celiac panel.  The GI should be able to do this.  Again, I have never had a positive on the TTG (IgA or IgG versions) and I have taken it at least five times.  I am confirmed via biopsy.  

The GI can also check for other GI related autoimmune issues like Crohn’s.  I though for sure my niece had celiac disease (and she did get the complete celiac panel done twice and an endoscopy).  Turns out she has Crohn’s.  ?

If the biopsy proves to be negative, consider the diet anyway.  The bottom line is feeling well.  In the meantime, load up on gluten!  

[Crispy chick]

Thank you. That is reassuring. I'm going to have to see how long my wait will be for endoscopy. I'm already on the list for one (just for my general issues, no celiac specific) and the wait is 12 months ?. I'm hoping the potential for celiac may bring it forward. Fingers crossed. 

[cyclinglady]

Since you might  have to wait 12 months, consider going gluten free now.  Add gluten into your diet two to four weeks prior to your endoscopy.  I must warn you that a challenge can even be worse.  It is worth researching and making an informed decision.  Google: gluten challenge.  

[Crispy chick]

Thanks. I fully intend to do this if I am facing a long wait. I'm just giving it a few more days until I see the gastroenterologist - just in case they can bump me up to a matter of weeks. If not, I'm going gluten free next week!!! My sister has a box of items waiting for me since she is celiac. 

[jean9v]

I had a false negative to blood testing.. but, I did find I was IgA deficient.. so that was a blessing... just go gluten-free... The day before you start.. write down all of your issues... and rate on a scale of 0-10... I will bet within 3-5 days you will be feeling better... at the end of two weeks... look over those issues...and rate them.. You will be shocked, to the improvement.   I went on the diet and it was a miracle... I met with my specialist and told him, what happened while I was on the diet, I did it without his orders, and how great that i felt... his response: If it walks like a duck... hence, no testing or biopsies ... take a multi vitamin with iron daily and just go on the diet already... you will be amazed how great you will feel.. and the bloat and water weight you will lose from all of the inflammation. 

[Crispy chick]

I am so fed up fighting!!! Just seen GI. He says highly unlikely I have celiac given I have had 3 negative tests over the years. He will do endoscopy and biopsies but the wait will be 9 months - UK. I am at a loss. So many of you guys had negative blood tests and in the UK they do not do the panel. 

I will try gluten free. Just frustrated because I have children and so would really like to know if this is celiac, for their sake!!!! 

I am fed up being made to feel like my symptoms are all in my head. ?

[aiellokrista]

My blood test was normal and I had flattened villi. Unt, the blood tests are not always accurate. For the biopsy, you will need to do a gluten challenge which means you need to load up on gluten prior to the biopsy. If you have celiac, you will be in agony as I was. Having said that, however, the only difference between celiac disease and non celiac gluten sensitivity is damage to the intestine, you can go gluten-free and see if you feel better. If you have either, you’ll feel better within 3-4 days. 

[jean9v]

same... i did not do the biopsy... either way, I can not do gluten and I feel cured, not being on Gluten... and my skin rash that I had for over 40 years is clear... Gluten Free is the way to Be...

 

[Crispy chick]

Thanks for the replies. They really help. I'm going to call up today and see where I am on the endoscopy list. If it is going to be 9 months, I need to try gluten free. I have been getting supplies in and am researching to get my head around it. 

Just so frustrating that I can't have the biopsy first. That's our NHS I'm afraid. 

[Posterboy]

On 3/22/2019 at 8:46 AM, Crispy chick said:

Hi. I'm new. Just looking for some thoughts. I am early 40s, female. My sister is celiac. I was diagnosed with IBS 20 years ago. 

For the last 18 months I have been suffering badly with the following:

Nausea

Dizziness 

Lightheadedness

Fatigue (very bad at the moment) 

Brain fog

Headaches every 2 days

I have bloating and gas, but I always have had hence my IBS in my 20s.

I had my bloods taken a year ago. Negative for celiac. Should I get the doctors to re-look at this???? 

Many thanks

Crispy chick,

This celiac.com might help you.

https://www.celiac.com/celiac-disease/large-number-of-irritable-bowel-syndrome-patients-sensitive-to-gluten-r3442/

I would also recommend this thread -- that ask's some of the same questions. ... it is kind of long but it is exhaustive...

https://www.celiac.com/forums/topic/118308-positive-dgp-not-celiac/

I hope it is helpful but it is not medical advice.

Posterboy,

 

[Posterboy]

Crispy Chick,

I also wanted to say take some Magnesium Glycinate for your chronic fatigue.

Here is how Magnesium can help fatigue issues.

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/ 

It can also be from low thiamine levels aka Beri Beri ...so take you a B-complex twice a day.

Here the research about CFS in IBS entitled "Thiamine and fatigue in inflammatory bowel diseases: an open-label pilot study."

https://www.ncbi.nlm.nih.gov/pubmed/23379830

Except for low B-12 today . ..most B-Vitamin deficiencies are not being regularly diagnosed today. . . and why taking a B-Complex 2/day for 3 or 4 months might help you.

Again I hope this is helpful but it is not medical advice.

posterboy,

 

[jean9v]

If you take a calcium magnesium pill before bed... you will sleep very well.. I have them that also contain potassium... like a cup of warm milk and it is good for you...  gluten free diet is easy... lots of veggies.. meats and fish... eating clean... you will be surprised how well you will feel  in such a short period of time.  You will never go back.