Low ig but normal ttg. But the more I learn about Coeliac the more it would explain my daughters physical and behavioural symptoms.

[Lrgthrcl]

This could be a long one, I'm sorry, it's my 1st place to offload and I'd love the opinions of people with experience. 

My daughter, 11yo, has had so many symptoms and time off school over the last few years that we're having to delve deep into why.

Physically: rash on upper arms and thighs forever, I thought dry skin. Same on cheeks at times with 'puffiness'; Pale / yellow at times with shadows under eyes; Low energy; Stomach pains (constantly reassuring her it isn't appendicitis); acid reflux burps; nausea; loose stools; always getting tonsillitis / viruses (last year she had tonsillitis, ear infection, burstbear drum and tonsillitis again within a month); mouth ulcers; headaches; leg aches and cramps (problems with ankles / straining etc when younger); flaky nails (I just assumed that was how some nails are); dry skin, especially on hands. I think that is it?

Behaviourally: Anxiety (mainly health related, eg: worried she has an illness, worried she will get an illness, worries about being ill in front of people or at school); panic attacks; difficulties regulating big emotions such as worry, anger etc; irritability over things she is sensitive to such as certain sounds; she has been obsessive over foods that can make her ill (dates, white meats, whether things are cooked properly etc); separation anxiety from me (myself and dad are separated so going to his twice a week is a challenge for her, we parent differently); major fear of blood, vomit, faeces; occasionally she has big emotional outbursts where she hates herself and wants to hurt herself; she avoids cracks in pavements / similar superstitious behaviour in case something bad happens; she loses concentration very easily, ADHD symptoms; she has been obsessive over safety of her things, tying her bedroom door shut obsessively so the dogs can't go in her room however this had dramatically improved; obsessive over cleanliness, if something touches the floor outside it needs to be washed (recently we went to a skate park and she panicked, refused to go into my fiancé's house because she didn't have a change of clothes and thought somebody could have been sick ages ago and her clothes touched it... I had to dettol her clothes so she felt clean); low self esteem; fits of irritability and rage when she begs me to help her find out why she is so angry; mood swings. I think that is it.

She has had a course of therapy and the school are helping with Elsa as well as getting her on the send list and getting her on the list to be tested for adhd. We have an Ed.psych working with her in school with me and her Dad, we are all (gp and school) pushing for cahms. I can't help but think that there could be a medical reason though and somehow I suddenly thought coeliac (I think it was the sicky burps that spurred me into researching) and I can't believe how much it affects the body and behaviour! To me, it all fits - am I just grasping at straws?! The gp tested and the ttg levels were normal (I didn't get a copy of the results, it wasn't a planned gp visit but another off school day because of pains, soft stool and off colour) but her ig levels are low. The gp is writing to paediatrics and taken a urine sample and in the mean time we are starting a food diary. 

Could it still be coeliac? 

If you read so far, I appreciate it thank you, it's good to offload even if nobody can help!

[trents]

Welcome to the forum, @Lrgthrcl!

Your daughter has many symptoms that point to possible celiac disease.

You mention that her "ttg levels are normal." Which ttg do you refer to? ttg-iga? ttg-igg? You also mention that her "ig levels are low." Do you mean igg? I am adding an link giving an overview of celiac disease blood antibody testing: 

Terminology can vary from place to place.

The most common antibody test that physicians order when diagnosing celiac disease is the tTG-IGA. It combines good sensitivity with good specificity. However, it is more accurate for adults than it is for children because their immune systems are immature. For children the DGP-IGA and the DGP-IGG should also be ordered. In addition, something called "total IGA" should be ordered ordered because if total IGA is low it can cause false negatives in individual IGA tests.

It is also important to understand that all testing for celiac disease may be rendered inaccurate if gluten is already being withheld from the diet or is being severely limited before testing is initiated.

From the way you spelled "coeliac" I gather you must be in the UK and under the strict protocols of the NIH so I'm not sure how much leverage you have to request additional testing.

Another option would be to immediately place your daughter on a strict gluten free diet and see if her symptoms improve. This might be challenging given the shard parent situation.

[Lrgthrcl]

Thank you for your response and the information, I will follow the link for a better understanding. To be honest I'm not sure where I got my spelling from, I think I assume the 'o' was in there...intestine, colon...it made sense in my head 😆. But yes, I'm uk. I might be able to get some extra testing via my life insurance if the NHS aren't able to offer them all? I'll request a copy of her results so I know what has been tested. I made sure we didn't withhold gluten before the bloods were taken and will continue to feed her gluten for in case further tests are required. 

 

Thank you for your response. 

[trents]

Please do keep us posted.

[knitty kitty]

Welcome to the forum, @Lrgthrcl.

Get your daughter checked for nutritional deficiencies.  Many of the symptoms you related are related to vitamin and mineral deficiencies due to malabsorption caused by Celiac Disease.  

Talk to the doctors about testing for deficiencies before starting vitamin supplements on your own.  Get testing done for more than just Vitamins D and B12.  Ask for an ErythrocyteTransketolase test for Thiamine B 1 deficiency.  

Doctors aren't familiar with nutritional deficiency symptoms and rarely recognize them.  I studied Nutrition before earning a degree in Microbiology.  I experienced the same symptoms on my journey to a Celiac diagnosis.  I understand how your daughter feels so desperately out of control of her emotions.  Our body and brain  cannot function properly without a sufficient supply of essential vitamins.  We cannot make vitamins and must absorb them from our diet.  If there's poor digestion and poor absorption and poor food choices, our body quickly runs out of the eight essential B vitamins and other essential nutrients, and our body and brain start to malfunction.  

Rashes can be signs of deficiencies in the B vitamins and fat soluble vitamins, especially Vitamins A and D.  Dark circles under eyes can be caused by Cobalamine B12 deficiency.  Flaking nails are a symptom of iron and B vitamin  deficiencies.  Cobalamine B12, Folate and iron deficiencies can cause anemia which can result in poor antibody production.

Abdominal pain, acid reflux, nausea and loose stools can be caused by deficiencies in Niacin, Pyridoxine, Riboflavin, and Thiamine, all needed to make and secrete digestive enzymes.

Recurring infections can be a symptom of Thiamine deficiency.  Thiamine usage is increased in illness, physical and emotional stress.  Headaches are linked to Thiamine deficiency.  Thiamine and magnesium deficiencies are linked to muscle cramps.  

Behavior changes can be caused by Thiamine, Niacin, Cobalamine B12, and Pyridoxine and Omega Three deficiencies. The symptoms overlap because these vitamins are important in making neurotransmitters and in brain function.  Neurotransmitters are made in the intestines.  If the intestines are damaged, as in Celiac, the neurotransmitters don't get produced.

Thiamine and Niacin deficiencies results in increasing anxiety and panic attacks, hypersensitivity and overload to stimulus, sensitivity to light, sound and touch.  ADHD is connected to Thiamine deficiency.  Emotional lability (not being able to control ones emotions, emotional outbursts, flying into a rage) are symptoms of Thiamine and Niacin deficiencies.  Niacin deficiency causes increased irritability.  Pyridoxine deficiency causes Obsessive Compulsive behaviors, impulses to follow rituals, superstitions and magical thinking, and impulses to self harm.  Nutritional deficiencies need to be corrected as quickly as possible to prevent permanent damage.

As sick as your daughter is, and as urgently as she needs the nutritional deficiencies corrected, a gluten challenge for further testing for Celiac antibodies would do more damage.  I suggest getting a DNA test to look for any known Celiac genes. 

Talk to your doctors about correcting nutritional deficiencies as soon as possible.

Do keep us posted on your progress!

[trents]

I agree with what knitty kitty is saying. Celiac disease results in vitamin and mineral deficiencies because of the damage done to the villous lining of the small bowel.

[cristiana]

Hello @Lrgthrcl

I am a Mod but haven't been on the forum for a while as I have a lot on at work, but saw you post. 

I think it is excellent that your daughter has been referred to paediatrics.  However,  if you do have private insurance, I'd definitely use it in your position as I suspect you will be seen much sooner.

I agree that addressing deficiencies something you can do now.  Has your daughter had her iron and B12 tested?  If these are low, that can cause awful anxiety, something that I had around the time of my diagnosis.  I would talk to your GP about this, if you haven't already.

Although it would be completely understandable for your daughter to try a gluten free diet without further testing, what I will say is that in the UK a formal diagnosis of coeliac disease is helpful as the NHS supports coeliacs in all sorts of ways - referral to a dietician, annual blood tests to check for compliance to the diet and any associated health issues, bone scans as osteoporosis can affect coeliacs, and in some cases gluten free food can be obtained via prescription.

I would have a good read of the Coeliac UK website, too, for UK specific advice.  There are special sections for children and young people.

Cristiana

 

[Lrgthrcl]

Wow, all of your responses have been so in depth and informative, you have no idea how much I appreciate that, thank you! I am absolutely pushing for answers and will be taking all of this information (and suggested reads) with me. I feel we are on the right track. 

I am absolutely not changing her diet or supplementing with any vitamins for now, while we do the food diary and until I hear more about the next course of action, I felt it was important to document all types of food and her bowel movements and any symptoms to see if there are any correlations and to prove that she has access to various nutrients. Thankfully she enjoys, and always has enjoyed all foods, so her diet is varied and healthy... although she managed her anxiety incredibly well at the dentist today so day 2 of documenting included a Greggs folowed by dunkin donut and frappe treat - the rest should be pretty healthy! 

Honestly, you have all made me  feel 'seen' and understood and that means a lot, thank you again! I will definitely keep adding to this thread as we hear more.

[knitty kitty]

@Lrgthrcl,

We call it a food/mood/poo'd journal.  Keeping track of mood swings helped me track high histamine reactions to certain foods.  

Good plan!  Great advocating for your daughter!

Looking forward to hearing from you!  Best wishes