dizziness recently diagnosed coeliac

[Mst27]

My daughter ,18, was recently diagnosed as a coeliac.

She had very low iron levels for 6/9 months before her diagnosis. She has been gluten free since her diagnosis 3 months ago. There have been slip ups but only by mistake and only on 3/4 occasions

. She was having dizziness regularly before diagnosis but this seemed to have stopped for a time. However she is suffering with dizziness more often again.

I wondered if anyone had experience of this and if it is related to being a coeliac or should we be pushing for more investigation into this. Also if there is anything anyone can suggest that might help. She will be starting university soon and I would love for her to feel well when she does.

Many thanks

[SabaAK]

Hello, I had the same issue and I think it’s relate to low iron and low ferritin level. For us celiacs we need to take iron supplement for a while and it usually takes a lot for iron and ferritin to reach the normal levels.

Saba

[Regalbirdy]

Hi,

My advice would be if in doubt, go back to the doctors. For at least nine months, following my diagnosis, I had to figure out on my own which vitamin and minerals deficiencies I had.

Follow-up post diagnosis support in my area was practically non-existent - unless you proactively asked for it, and I don’t think my area of the UK is unique in this!

The outcome of my multiple additional doctors visits was a referral to an endocrinologist to resolve my severe vitamin D deficiency; routine vitamin B12 injections when I didn’t respond to taking B12 orally; and many further blood tests to check for any other deficiencies.

I guess what I’m trying to say is it’ll probably take time, detective work and patience to for her to feel completely better.

In my case, it was probably over a year before I had a good grasp on both my physical and emotional well-being. I think this is length of time is not uncommon, as I’ve heard similar stories in the decade since my diagnosis.

Btw, one of the things that is often overlooked is the psychological impact – because remember this diagnosis is for the rest of one’s life. It changes your relationships, both people and to food because food can be such a big part of social gatherings. At the moment, her new diet may be almost a novelty. Unfortunately, the novelty does eventually wear off - and that’s when it can get mentally tough. Get her to seek counselling support from her university’s provider if needed.

Dizziness wasn’t one of my symptoms however, fatigue certainly was. I suggest double checking for hidden sources of gluten. If you’re absolutely sure she is gluten-free, then start considering secondary food intolerances. Her diet will have changed quite a lot in recent months, and some of these new foods may not be suiting her. Again this is not uncommon, especially in the first few months following diagnosis. E.g. Dairy is a known issue for about 20% of coeliacs in their first year, because the gut continues to struggle to produce the enzyme to digest it.

Also a rabbit hole worth looking into is something called ‘intestinal permeability’. It’s when unwanted molecules make it through the damaged gut wall and transition into the body. This can cause inflammation in all sorts of areas. Perhaps it’s food for thought…

I hope she feels better soon.

[CATRYNA49]

I would venture to say that your daughter's dizziness is a result of low iron, not the Celiac. A diet rich in red meat, especially organ meats would help your daughter maintain a decent level of iron. Also, at 18, if her menses are heavy that would also indicate that she may need to take an iron supplement. Just make sure it is an organic vs inorganic.

[Researchfan]

Hi. Sorry to hear. Dizziness is no fun. It’s a symptom I get when iron drops. Yes you should push for more investigation. Agree with other replies. She needs her vitamins and minerals checked. Iron especially. Is she supplementing since dx? It does take time for the gut to heal, weeks, to months, up to 2 years. She’s got age on her side so should heal quicker given the right nutrients and strict gluten free diet. She might need medicinal doses of iron, B12 and folate possibly. OTC supplements are very low and not likely to correct deficiency if it’s there, they just maintain when no deficiencies. If she is deficient, Look into oral iron supplements or the sprays if not already taking, as these are better absorbed - especially when the gut is healing it’s harder for adequate absorption of nutrition.

Also concentrate on nutrient dense whole real foods. Avoid things that inhibit iron absorption at the same time - this bit is overlooked often. Things like cereals - gluten free ones obviously, - and gluten free grain based foods, any dairy, milk, cheese - whether lactose free or not - stops absorption of iron in the gut. Wait an hour or 2 between having iron rich food or supplements for example and having anything with milk in it. Drinks like tea and carbonated drinks also inhibit iron absorption. Same rule. The only way to get levels up is to be strict like this like being strict gf. It does work.

Might also be worth checking her blood pressure isn’t too low? A pinch of sea salt in water can help with naturally low blood pressure. But if you can check blood pressure at home when she feels dizzy. If it’s consistent low and heart rate up, anaemic.

Reactions to foods sensitive to can also cause dizziness and drop in blood pressure. But only consider that once you’ve ruled out the nutritional status and possible hidden gluten. Avoid gluten free oats for the first six months if not already. A minority coeliacs are also sensitive to (gluten free) oats - the grain has toxic gluten epitopes to some coeliacs depending on the specific genes for it (quite complicated biochemistry). It’s why it’s still debated in medicine whether oats are suitable. Australia err on the side of caution and don’t routinely recommend oats to coeliacs; at least to begin with. They then may be reintroduced later and tested in the diet. There is a similar reaction with casein in milk. But these are things to look at later if everything is corrected for and on the right track but not healing as should.

Maybe ask for another blood test first to check if the antibodies have gone down - a good sign no hidden gluten in the diet and ongoing inflammation being the cause of dizziness.

Sorry this is such a long reply!

Well wishes!

[Narwhal10 in reply to Researchfan]

But you know you stuff 😘