So worried about 11 year old daughter

[kate g]

Hi there

any advice welcome im just so worried about our daughter. 8 weeks ago she experienced trouble Swallowing suddenly, 4 weeks later diagnosed as celiac. Now 4 weeks totally gluten free being v strict her symptoms no better shes still struggling to swallow, body aches, stomach and headaches the most regular symptom and now blurred vision. She just started secondary school but im finding it hard sending he in much when shes so poorly and fatigued. Anyone else had these types of symptoms even after going gluten-free? 
got a neurologist appointment booked in a month.

 

 

[trents]

Welcome to the forum, @kate g!

Moving up to a new level of school can be very stressful. How's your daughter's stress level? Some of her symptoms could be stress related but the swallowing issues and blurred vision are not likely among them.

There can be withdrawal symptoms when going gluten free but she should be past that now and besides, the swallowing problem predated going gluten free.

What led to her celiac diagnosis? Was she having any GI distress? Did her diagnosis include a biopsy of the small bowel lining?

[kate g]

Yes biopsy and bloods she was 3500 meant to be below 20 on the bloods 

Thanks for your advice ive read other celiacs suffer swallowing issues though rare just thought she’s be better by now 

[trents]

One of the symptom categories we now know that can accrue from celiac disease is neurological problems. Several of her symptoms could fall into that grouping: swallowing, blurred vision, headaches.

The blood antibody score of 3500? Was that tTG-IGA? Was her biopsy positive and was it given a Marsh scale score?

I'm wondering if she has some severe vitamin and mineral deficiencies. Damage to the small bowel villi by celiac disease can cause that because that is the area of the intestinal track where all of our nutrition is absorbed. You might consider putting her on some high potency vitamin and mineral supplements. I'm talking about much more than a multivitamin. I mean a high potency B-complex, D3, magnesium glycinate, and zinc.

[kate g]

Thanks trent shes on liquid iron from dr i will

go to an immunologist next i think to look at it from the vitamin angle etc as gastro dr not very helpful

yes biopsy confirmed dont know mark should i ask

yes bloods are the ones you mentioned 

[RMJ]

That is a very high antibody level! It is going to take a while to come down to normal, so she will still have those anti-self antibodies trying to do damage for a while.  Four weeks gluten free is not very long.  

It is unfortunately fairly normal for gastroenterologists to not be terribly helpful in the healing from celiac disease. I hope you can find a doctor who will look at the big picture and help her more.

I agree with @trents that there could certainly be a degree of malnutrition affecting her. 

[trents]

RMJ makes a great point about the high level of antibodies continuing to do damage for awhile. I have participated in this forum for years and that is the highest tTG-IGA antibody score I have ever heard of by far! Did you really mean to typed 3000 and not 300?

[kate g]

Yes it was 3607 anti ttg iga

[cristiana]

Hello @kate g

I am so sorry your daughter is going through all this.  Although she should soon start to feel better, it can take a while for symptoms to improve. 

Personally, I would say the swallowing could well be anxiety related, I know several people who have had this when anxious.  Might be worth looking up 'globus'.    Also, could it be that your daughter might suffer from acid reflux which could make it painful to swallow?  It might be worth googling a reflux diet online and see if following one for a while helps (limiting fatty, spicy and citrus food, not going to bed on a full stomach, sleeping on a wedge pillow to stop the acid coming up through the throat, avoiding fizzy drinks etc). 

As regards the blurred vision, this could be a type of migraine, again common in coeliacs.  

I had body aches for a while after my own coeliac diagnosis 11 years ago.  They did get better, but was one of the last symptoms to go.  

Out of interest, did your gastroenterologist tell you to exclude oats from her diet?  In the UK where I live nutritionists often recommend oats are dropped for six months to a year, before reintroducing.  A small number of coeliacs cannot tolerate oats, or take a while to be able to tolerate them again.  Oats can cause similar symptoms to gluten in some individuals.  (When oats are reintroduced, make sure they are 'pure oats', certified gluten free.)  Another issue which can continue to cause stomach pain and bloating is dairy.  It might be worth going dairy free for a few weeks, then reintroducing.  Newly diagnosed coeliacs often cannot digest dairy properly because the tips of the villi are damaged in the gut, that's the part of the gut that breaks down lactose.  

Just a few thoughts.  Do come back if you have any questions.

Cristiana

 

Edited September 15, 2024 by cristiana

[knitty kitty]

4 hours ago, kate g said:

still struggling to swallow, body aches, stomach and headaches...and now blurred vision....fatigued...

These are symptoms I had prior to diagnosis.  I had become seriously malnourished.  Unfortunately, my doctors didn't recognize nutritional deficiency symptoms, so I depended on my university studies in nutrition and microbiology. 

Before taking any vitamin supplements, talk to your doctor and nutritionist about testing for nutritional deficiencies.  Taking vitamin supplements beforehand will mask any deficiencies.  Testing for nutritional deficiencies is part of proper follow up care for Celiac Disease.

Keep in mind, gluten free facsimile foods are not required to be enriched or fortified with vitamins like their gluten containing counterparts.  Add to that malabsorption, and an increase metabolic demand while ill, so going on a gluten free diet, especially while having absorption problems, can result in nutritional deficiencies.

Do talk to your doctor soon about possible Thiamine deficiency.  Dysphagia, trouble swallowing, fatigue, abdominal pain and blurred vision ares symptomatic of Thiamine deficiency, which can quickly worsen and lead to altered mental status, and is life threatening.  I've experienced these symptoms myself.  

Thiamine is one of eight essential B vitamins.  We need all eight, but Thiamine is the first to run out.  We can become depleted in as little as three days to three weeks.  

A medical doctor can administer Thiamine intravenously.  Thiamine is nontoxic and safe even in the high doses required to reverse Thiamine deficiency.  I took over-the-counter Thiamine to correct my Thiamine deficiency because my doctors were undereducated about nutrition.  I had health improvement within an hour.  No harm, no foul to try it.  

 

Here are some interesting studies...

Wernicke Encephalopathy Presenting with Dysphagia: A Case Report and Systematic Literature Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9788281/

 

Association Between Vitamin Deficiencies and Ophthalmological Conditions

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10363387/

 

Adopting a low histamine autoimmune diet will help reduce antibodies and inflammation...

Efficacy of the Autoimmune Protocol Diet as Part of a Multi-disciplinary, Supported Lifestyle Intervention for Hashimoto’s Thyroiditis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6592837/

 

[kate g]

Thank you im grateful for your advice feeling v let down drs seem relaxed about it but im worried sick as cant get a quick neurologist appointment, she cant attend school more thsn a few hours its just awful thought she’d be getting better by now 

[knitty kitty]

I understand.  You've every right to be worried.  I'm very concerned, too.  If she doesn't improve, I would suggest a visit to urgent care or the emergency room.  Thiamine deficiency, if not corrected quickly can cause permanent damage, especially with neurological symptoms.  

Doctors are not as knowledgeable about vitamin deficiencies as they need to be. 

There's no harm in trying Thiamine if only to rule it out.  I took supplements, Benfotiamine and Allithiamine (Tetrahydrofurfuryl Disulfide - TTFD), to correct my Thiamine deficiency.  My story is in my blog, if you click my name, under activities.  

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

And...

Thiamine deficiency disorders: a clinical perspective

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

[Wheatwacked]

11 hours ago, kate g said:

shes on liquid iron from dr

Why the iron?  Have the doctors tested for vitamin D.  Is she eating enough eggs, milk, meat?

Start her on the Thiamine today.    The minimum for a child of four years is 0.6 milligrams.  That's 600 mcg.  That is 3X the minimum folate (200 mcg).  fThere is no established upper limit for thiamin intake in humans because there is no evidence of adverse effects from high thiamine intake.

There is plenty of evidence something bad IS happening now. Thiamine is NOT a medical issue, it is a food issue. 

The World Health Organization recommends daily oral doses of 10 mg thiamin for a week, followed by 3–5 mg/daily for at least 6 weeks, to treat mild thiamin deficiency [23]. The recommended treatment for severe deficiency consists of 25–30 mg intravenously in infants and 50–100 mg in adults, then 10 mg daily administered intramuscularly for approximately 1 week, followed by 3–5 mg/day oral thiamin for at least 6 weeks. Thiamin Fact Sheet for Health Professionals there is a list of foods with thimin content,  Breakfast cereals, fortified with 100% of the DV for thiamin, 1 serving1.2 mg 100%

I think waiting a long time to see a doctor before giving more thiamin is a mistake and puts her in unnecessary danger due to a beauracracy. Ideally get tested today, start tomorrow but wait weeks, while she suffers?  I could not do it.

[cristiana]

Hello again @kate g

I wonder if you are posting from the UK?  We get a lot of people from the UK posting on this forum because I don't think Coeliac UK have their own. (It is an excellent organisation, by the way, and well worth joining for its gluten-free shopping guide/app.)

I ask as in my own case, the only NHS tests I was offered  for deficiencies were B12 and iron.  I suspect, if you are in the UK, you will have only been offered those on the NHS and the iron test came back deficient, hence your daughter being put on a liquid iron supplement.  If it is Floravital, that's great, it is gluten free, but be careful as the packaging looks very much like Floradix, which contains gluten.  

I ended up seeing a private, highly qualified private nutritionist and even she didn't offer me a deficiency test, other than one for Vitamin D.   Without any evidence, she put me onto a general supplement which gave safe daily levels of a wide range of vitamins which did help.

For heavier supplementation, one has to always be careful of over-supplementing which can be dangerous, so it would be fantastic if you can get your GP/gastroenterologist to test for other deficiencies, then monitor the situation.

Regarding your daughter's high tTG levels, I am sure that in the past few years someone did post with very high figures on this forum, in the thousands, but I cannot find the post now, of course! When I was diagnosed the local NHS pathology labs were reporting that blood test with a cut off at 100, so one only ever knew as much as that.

For the time being, I do hope the school is being supportive?  

Cristiana

 

 

Edited September 16, 2024 by cristiana