False Negative Test Results?

[FoodLover]

I have about 19 of the symptoms in the short list or have done over the last 30 years, much more on the long list. My daughter is 3 and a half and is starting down exactly the same road as me at the same age. I am trying to figure this all out so she doesn't have the same unjointed and undiagnosed medical history as I do. We had bloods taken and these are the results. Any help in pointing out if there is a potential we both had a false negative or any ideas of any other tests at our next GP appointment would be welcome. We have had a few weeks being gluten free based on the food intolerance IgG results and it has improved things to some extent but we have found when it is removed we are very sensitive to low level cross contamination & topical use (not intentional!) which seems my steepest learning curve it is always hiding somewhere just when you think you've cracked it. There are lots of other results which I'm sure would be relevant if I knew what I was looking at! I have been trying to research as much as I can but it is all a little overwhelming after a while.

Thanks in advance for any guidance you can give.

 

Here are my DD results including a couple of the out of range anomalies from the blood sheet:-

25 OH Vit D 75mmol/L (50-200)

Gliadin Antibodies IgG 0.0 (Negative: <7u/ml Equivocal: 7-10 u/ml Positive: >10 u/ml) 

Gliadin Antibodies IgA 0.1 (Negative: <7u/ml Equivocal: 7-10 u/ml Positive: >10 u/ml)

Tissue Transglutaminase IgA 0.00 u/ml (0-10)

Reticulin Ab"s (IgA) Negative

Endomysial Ab"s (IgA) Negative

Total Immunoglobulin E 36 kIU/l (0-60)

Folate serum 4.9 ug/l (4.6-18.7)

 

Active B12 185 pmol/l (25.1-165)

Bicarbonate 19 mmil/l (22-29)

Aspartate Transferase 38 iu/l (0-31)

LDH 329 iu/l (135-214)

Phosphate 2.07 mmil/l (1.45-1.78)

HDL Cholesterol 1.1 mmol/l (1.2-1.7)

Platelet count 500 x10 (150-400)

Monocytes 0.64 x10 (0.7-1.5)

TSH 3.16 mli/l (0.85-6.5)

Free T3 5.6 pmol/l (3-9.1) 

 

Separate foodprint test IgG Gliadin 70 (>30u/ml elevated, 24-29 u/ml borderline, <23 normal)

Separate foodprint test IgG Milk 127 (>30u/ml elevated, 24-29 u/ml borderline, <23 normal)

 

And my results including a couple of the out of range anomalies/same as above from the blood sheet:-

101 OH Vit D 75mmol/L (50-200)

Gliadin Antibodies IgG <0.0 (Negative: <7u/ml Equivocal: 7-10 u/ml Positive: >10 u/ml) 

Gliadin Antibodies IgA 3 (Negative: <7u/ml Equivocal: 7-10 u/ml Positive: >10 u/ml)

Tissue Transglutaminase IgA 0.5 u/ml (0-10)

Reticulin Ab"s (IgA) Negative

Endomysial Ab"s (IgA) Negative

Total Immunoglobulin E 53 kIU/l (0-100)

Folate serum 6.7 ug/l (4.6-18.7)

 

Active B12 78 pmol/l (25.1-165)

Bicarbonate 21 mmil/l (22-29)

Aspartate Transferase 24 iu/l (0-31)

LDH 243 iu/l (135-214)

Phosphate 1.23 mmil/l (0.87-1.45)

HDL Cholesterol 1.4 mmol/l (1.2-1.7)

Platelet count 222 x10 (150-400)

Monocytes 0.41 x10 (0.2-1) 

 

Separate foodprint test IgG Gliadin 70 (>30u/ml elevated, 24-29 u/ml borderline, <23 normal)

Separate foodprint test IgG Milk 100 (>30u/ml elevated, 24-29 u/ml borderline, <23 normal)

 

So for the symptoms hope I have got the gist of our symptoms down below but as a 'brief' summary over the years on and off I have had:-

Floaters/spots & black lines in eyes & burst blood vessel, bloodshot eyes

White flecks on teeth

Mouth ulcers

Joint/muscle pain

Stomach pain

Reduced growth

Wind

Indigestion

Constipation

Slight blood on toilet paper when wiping

Asthma diagnosis but it wasn't

Increased pulse

Palpitations

Blood pressure highs & lows

Lethargy

Fungal Infections

Bruising easily

Irritability

Iron deficiency

Dizziness

Light Sensitivity

Headaches

Cold hands & feet - Raynauds

Skin pimples - not itchy

Itchy skin

Runny nose when in tractor

Sleep Issues

Bloated stomach

Sodium deficiency

Mind fog

Memory issues

Lack of concentration

Large nose bleeds sometimes every day for a week or more

Back pain

Nail ridges

Cravings & huge appetite

Vomiting

Weight Loss

Immune Issues

 

I've had gastric issues for as long as I can remember including terrible wind - sorry for TMI in this post but diagnosed with ME while I was still at school when they had no other ideas so just been living with the on off issues, I was thinking this was as good as I could get for me. When I was 5ish I often had a very small amount of blood following a bowel movement, really itchy and probably had thrush never wanted to discuss it at that age really but I think I just assumed everyone did and I had really erratic bowel movements either constipated or quick. For years I was under par and picked up pretty much every infection going. Had continual fungal infections huge verucas on my feet. I had chronic anaemia - sat in school nurses office frozen with layers of clothes on while they tried to warm me up by an electric fire. The doctors eventually tried to draw blood which was so thick they struggled to and then when the results came back ordered me down to the surgery immediately to take iron tablets otherwise I would have to go for a transfusion. They never established a cause. Now I look back came out in a red itchy rash on my neck when I used the wheat shampoo that I loved the smell of, was also addicted to bread, had near enough constant lethargy, dizziness & brain fog. 

The times when I have been 'better' have been coincidentally when I have been eating less bread and trying to keep fit! My diet over the last 10yrs has never been high in processed foods really (other than a loaf of bread, baked beans & oatibix). Had some IgG tests done and Gliadin, Wheat, Barley etc all came up along with Dairy and pretty much most foods with high levels of natural glutamates. At the same time blood test for coeliac was done and came up negative. At this point though I had cut back on bread perhaps having it every other day which was my only real source of gluten but was eating oats for breakfast so possible contamination there together with all the other stuff you don't realise.

I thought I had been off gluten for longer but due to identifying other sources it is probably now 4 weeks (together with dairy & eggs). Brain fog has lifted & have lost 2 stones in weight but keep losing it so a little concerned about that. Had plenty of other food sensitivities that have appeared over the years but have been able to reintroduce some with no issues. Have not tried to reintroduce gluten but had a possible contamination issue a week ago - I got really itchy forearms wrists and neck, face eyes and scalp, lethargy, brain fog and needed to head to the toilet pdq. Identified this to be a cake tin contamination. The second was three days ago a supposedly gluten free buckwheat cracker (my only current 'processed food' labelled gluten free and containing only buckwheat & sea salt) which again gave the intense itching, lethargy, stabbing pains like needles poking below belly button and needing to be near the toilet. I didn't realise this was the cause until yesterday when I gave them to my daughter too and my symptoms worsened in an hour and she started to itch, lethargy etc. The itching disappears after 24 hours or so as does the lethargy the digestive issues take a little longer 2-3 days. Now I have lost the weight on these occasions I can see that I am bloated too. I had forgotten the itching of my youth and I would think my body just gave up displaying it as a symptom but now having been gluten free it is more severe when it does happen. My underarms had been looking a little yellow which had disappeared after being gluten free however it has returned in one underarm after these two occasions. I lived on bonjella as a child and on these two occasions I have had mouth ulcers. I also bruise fairly easily and always have done. 
 

 

I am happy to stay gluten free as I can see for me that is perhaps the key to all my unexplained health issues over the years but thinking I need a diagnosis for the sake of my daughter. I don't want to put her through any unnecessary stress. Even my verucas are reducing in size - bonus. Her changes in temperament have settled down following the elimination of gluten, dairy etc she has increased her vitamin intake slowly and is tolerating them. In the incident with the buckwheat crackers she had a visible purply red rash on the inside of her elbow which is where she had been getting eczema as on the back of her knees. The times this got worse were when she started toddlers & pre-school and coincidentally started eating bread sticks and more sandwiches - I had blamed the oils and preservatives! This itching has subsided and she has not had any visible dermatitis type issues until the contamination incidents. When she was a baby she often had a rash around her mouth and on her wrists if the weetabix at breakfast was not wiped off immediately I always thought it was the milk. She became addicted to bread, as did I when I was young and hence one of the reasons for cutting down on this considerably as I could see it was an issue as her tummy looked overly bloated but was thinking more of it from the preservatives, carbs etc angle. We moved to oatibix then porridge a year ago and although we had a slight improvement I can see now that this was not the best of ideas! I now make everything we eat fresh and am enjoying my time in the kitchen. This week she came back from school lethargic and pale and was unable to sleep, something we both suffer from when there has been gluten contact. After a lot of detective work she had fed the ducks with bread on a school trip to the farm. 

[SMRI]

False negatives are very rare.  If I'm reading your results right, it looks like you are lactose intolerant.  The only other tests I would ask for is a total IgA and IgG with subclasses.  If your IgA level is normally low, that will change the results of your tt IgA.  If you are low in IgG subclass 3, you will have similar symptoms of Celiac but it's not the same.  There are over 300 symptoms for Celiac but the majority of those symptoms can be something else as well.  What are your symptoms?  Maybe seeing those we can help point you in the proper direction but based on your results, it's highly unlikely that you are Celiac.  If your tests showed that you were a 6 on the TT IgA, maybe...but 0, it's unlikely.

[ravenwoodglass]

 False negatives do happen. It delayed my diagnosis for many years. However if you want to have celiac related testing done you have to be eating gluten. If you have stopped and improved and any introduction makes your symptoms come back then you know that your body doesn't want it. That will make a challenge difficult.

 You should get the total IGA and IGG done. I have never seen a 0 for those gliadin related tests before. Doesn't mean it doesn't happen I have just never seen it.

You both have very low B12. A sublingual supplement will help with that. Do ask the ped before giving it to your child though. Low B12 is quite common for folks with celiac. 

[FoodLover]

 False negatives do happen. It delayed my diagnosis for many years. However if you want to have celiac related testing done you have to be eating gluten. If you have stopped and improved and any introduction makes your symptoms come back then you know that your body doesn't want it. That will make a challenge difficult.

 You should get the total IGA and IGG done. I have never seen a 0 for those gliadin related tests before. Doesn't mean it doesn't happen I have just never seen it.

You both have very low B12. A sublingual supplement will help with that. Do ask the ped before giving it to your child though. Low B12 is quite common for folks with celiac. 

Thanks for your help ravenwoodglass, yes see what you mean on the challenge aspect. If I have to I will go back on it but I don't think I would be able to give her it knowing the effects it has. I was confused that different labs had different IgG gliadin results so will hopefully get some idea when we go back to the GP. I have done a symptom list too so I don't forget everything when I go, I've added it to my original post, maybe it is all coincidental but I have a strong feeling my body doesn't want it! 

[nvsmom]

Ditto Ravenwoodglass.  False negative do happen in up to a quarter of all cases, but it would be unusual to have all the tests come up as negative - the reason doctors run so many is with the (correct) hope that at least one test will catch a celiac.  And those zeros really are not  a common result.  Kinda odd.  

 

Get those immunoglobulin A and G tests (total serum IgA and IgG) if you can.  If they are low they will cause false negatives.

 

Otherwise it looks as though you and your DD do not have celiac disease.  Have you considered non-celiac gluten sensitivity (NCGS)?  I think celiac disease is a strong possibility since there is a history of autoimmune diseases in your family, but NCGS could be the problem. It has all the same symptoms as celiac disease except for the villi damage.  NCGS could be causing your problems.  Unfortunately there are no reliable blood tests for NCGS yet; it is usually diagnosed by a positive response to the gluten-free diet.

 

The only other thing I can comment on is your daughter's thyroid tests.  Generally people feel their best if the TSH is close to a 1.  Most TSH normal ranges go as high as 2 or 3, that 6.5 upper normal limit is really high and outdated.  Your daughter's result of 3.16 could indicate hypothyroidism in some people (not so much in others).  I would keep an eye on that and watch for hypothyroid symptoms.

 

Also, her free T3 is in range but most people feel their best when the result is in the 50-75% portion of the lab's normal reference range, and your daughter is a bit below that. 6.05 would be the halfway point.  She is close to the ideal but a 6 something or a low 7 would may be better.... Again, this varies between people but many people with hypothyroidism might feel less than ideal with your daughter's lab numbers.

 

I also wanted to mention to you to think about getting those floaters checked out.  I have a family member with uveitis, her main symptom was floaters, and she is in treatment to slow it so it doesn't worsen and threaten her sight.  I would mention the floaters next time you get your eyes checked.

 

Best wishes to you.

[FoodLover]

False negatives are very rare.  If I'm reading your results right, it looks like you are lactose intolerant.  The only other tests I would ask for is a total IgA and IgG with subclasses.  If your IgA level is normally low, that will change the results of your tt IgA.  If you are low in IgG subclass 3, you will have similar symptoms of Celiac but it's not the same.  There are over 300 symptoms for Celiac but the majority of those symptoms can be something else as well.  What are your symptoms?  Maybe seeing those we can help point you in the proper direction but based on your results, it's highly unlikely that you are Celiac.  If your tests showed that you were a 6 on the TT IgA, maybe...but 0, it's unlikely.

Thanks for taking a look SMRI I did post a reply before but for some reason it has not popped up here. I think I am still on the moderated list being a new member but sure I didn't say anything out of order!

I have edited my post and added some of the symptoms I've been suffering with. It is a bit of an anomaly about the Gliadin IgG because they were elevated on one and non-existent on the other. Hopefully things will become clear at our consult tomorrow.

[FoodLover]

Ditto Ravenwoodglass.  False negative do happen in up to a quarter of all cases, but it would be unusual to have all the tests come up as negative - the reason doctors run so many is with the (correct) hope that at least one test will catch a celiac.  And those zeros really are not  a common result.  Kinda odd.  

 

Get those immunoglobulin A and G tests (total serum IgA and IgG) if you can.  If they are low they will cause false negatives.

 

Otherwise it looks as though you and your DD do not have celiac disease.  Have you considered non-celiac gluten sensitivity (NCGS)?  I think celiac disease is a strong possibility since there is a history of autoimmune diseases in your family, but NCGS could be the problem. It has all the same symptoms as celiac disease except for the villi damage.  NCGS could be causing your problems.  Unfortunately there are no reliable blood tests for NCGS yet; it is usually diagnosed by a positive response to the gluten-free diet.

 

The only other thing I can comment on is your daughter's thyroid tests.  Generally people feel their best if the TSH is close to a 1.  Most TSH normal ranges go as high as 2 or 3, that 6.5 upper normal limit is really high and outdated.  Your daughter's result of 3.16 could indicate hypothyroidism in some people (not so much in others).  I would keep an eye on that and watch for hypothyroid symptoms.

 

Also, her free T3 is in range but most people feel their best when the result is in the 50-75% portion of the lab's normal reference range, and your daughter is a bit below that. 6.05 would be the halfway point.  She is close to the ideal but a 6 something or a low 7 would may be better.... Again, this varies between people but many people with hypothyroidism might feel less than ideal with your daughter's lab numbers.

 

I also wanted to mention to you to think about getting those floaters checked out.  I have a family member with uveitis, her main symptom was floaters, and she is in treatment to slow it so it doesn't worsen and threaten her sight.  I would mention the floaters next time you get your eyes checked.

 

Best wishes to you.

Wow, thanks for all that nvsmom much appreciated. I will keep an eye on her TSH and get myself booked in for my next eye check as it is about due.