Can anyone help?

[SaraG]

I've been suffering with repeated ill health since May 2010 - throat infections, flu type illnesses etc - initially it was every 2/3 months but over the past year it's been every month or so. I never had the classical (stomach) symptoms of CD and I was told that my repeated illnesses was probably how I was reacting to gluten. I was diagnosed with CD in late November 2010 following gastroscopy/biopsy. However, after being strictly GF since December 2010, the coeliac consultant has now decided that my repeated illnesses are unlikely to be related to CD - my TTG is now down to 3 from over 200. My ferritin and vitamin D levels were low but are now in the normal ranges. I was only diagnosed with CD as I was referred to Haematology in 2008 to investigate a persistent macrocytosis (MCV fluctuating between 101 and 106, and most recently at 105/106) and constant raised platelet count (this fluctuates between 400 and around 520). Haematology have been re-testing my blood every 6 months since 2008 and have found no explanation to date (Folate, vit B12, liver function etc have always been completely normal) - they thought CD was causing these abnormalities but this does not now appear to be the case. Prior to May 2010, I was very healthy and rarely got ill. I have recently noticed that my throat appears to swell slightly after eating certain foods (e.g. yoghurt) and becomes irriitated (itchy) after eating other foods (e.g. coconut). Over the past few days I have excluded all dairy and my throat no longer feels constantly swollen.

Has anyone else experienced anything similar or does anyone have any suggestions of what else I could investigate? Thanks

[Lynxcat]

Hi Sara, Sorry to hear that you've been knocked sideways with so many ailments. We are finding that many people who develop coeliac disease often find that they are having reactions to other food groups. Many become lactose intolerant others cannot have dairy at all and a few find problems with food groups of many different kinds. I think that in order to help yourself you may find it useful to start a food diary. Religiously write down absolutely everything that you eat and drink and at the bottom of each day list the symptoms you are experiencing. This should help, with the aid of a dietician which food groups you may need to exclude, reduce or have further investigation on. You may find that converting to Goat or Sheep's milk, cheese and yoghurt at least for a while may be helpful.

I am a lay person but I think that you may be able to experience a type of anemia through macrocytosis - (the blood cells being larger divide more slowly through lack of vitamins to form the DNA and RNA often made worse by a lack of Vitamin B12. B12 is extremely complex as it requires other members of the B vitamin family [B9 and B6 especially but it is advisable to have the full range as it is easy to create imbalances which cause other symptoms], to make it function and work properly within the body. So a person may have enough B12 but be unable to use it effectively. Do you have the full range of B vitamins in your diet? Have the doctors examined your diet? Do you perhaps take a good quality Vitamin B Complex tablet? .. )

I hope that this helps a little.

[Hidden]

Hi Sara and poor you, the only things I'd like to add to this is that when we are first diagnosed and before our villi has recovered properly we are lactose intolerant because the enzyme lactase is produced at the tips of the villi hence lactose intolerance. One of the most common symptoms of a reaction to lactose is a blocked up nose.

As for repeated cold and flu symptoms this is classic when we are run down.

I would go on a highly nutritious diet using fresh fruit, veg and meat and avoid as many processed foods as possible. I also agree 100% about the food diary.

And good luck.

[tug_6 in reply to Hidden]

most of us seem to have reached more or less the same answer, Lactose, often the cause of many problems, yet some doctors leave the test till last, you can get lactose free at most supermarkets, on their website search for lactose free and you will be suprised how many items are there. good luck and i hope you are better soon.

[meanioni in reply to tug_6]

I don't think lactose free is going to help.

If a coeliac consumes gluten the villi in the intestine get damaged. One of the first areas that gets damaged is the area that produces lactase, the enzyme that digests lactose. This is why some coeliacs have problems with lactose. Once off the gluten, many coeliacs recover. Some, who have permanent damage, don't.

The symptoms from this type of damage are more intestinally related - indigested milk sugars pass into the gut where they ferment. This creates bloating, IBS, wind, diarrhoea. You can occasionally get a rash as well.

Eating lactose-free foods will help with this.

The symptoms SaraG is describing appear to more allergy-related - the body in response to a substance produces histamine - this is a natural chemical designed to aid body healing - it opens up blood vessels to allow the immune system to deal germs from a cut, etc. Hence, redness/swelling, etc.

In an allergic reaction, the body can sometimes trigger an immune response in error to a food or other substance. One clear marker is that this usually happens before the food gets to the gut. So the fact that the throat is swelling/itching indicates it is an immune rather than lactose issue.

This is potentially quite serious as a severe reaction could lead to anaphylaxis - if the throat swells too much, breathing issues can occur and can be potentially lethal.

Allergies can change over time (in terms of severity), but one thing I would say is that if you are getting throat-swelling, it implies it is getting worse rather than better.

My advice would be to speak to a doctor soon to get an allergy test - these are easy and painless. And in the interim, if you do get throat swelling/itching, stop consuming that food/drink (you might want to do that anyway) and try an anti-histamine tablet (hayfever tablet) - if you improve afterwards it is almost certainly an allergy.

[meanioni]

Sounds like a dairy allergy. and as Lynxcat/Jerry said - keep a food diary and talk to the doc. You can have a formal allergy test for milk which will prove it.

The constant cold/infection problem could be a related to a number of things, such as your stress levels, nutrition, etc. Another potential cause could be an underactive spleen which can be a factor in some coeliacs.

Your spleen is a key part of your immune system and one that is underactive can give rise to an increased risk of infections, etc.

[SaraG]

Thanks v much for your responses everyone, it's been very helpful to hear your opinions and suggestions. I have already started a food diary and I spoke to my GP yesterday - I will be avoiding dairy for 2-3 weeks then seeing if I get any reaction to very small amounts of various dairy products. The GP said this would be more accurate than any sort of allergy/intolerance testing. I will also be trying to keep my diet as simple and nutritious as possible and will look into finding a good quality Vitamin B Complex tablet. I am due to see Haematology again at the end of May to further investigate the persistent macrocytosis and constant raised platelet count - my GP doesn't think that any food allergy or intolerance would explain this.

[tug_6]

it seems that every time i try to answer a question somebody over-rules it. i have only been coeliac for 40 years and my brothers and sisters even longer. i think i will leave this group and leave it to the people that like to use medical terms rather than experience.

[Sappho]

Have you had your thyroid levels tested in a blood test.? I started getting various illnesses and getting the scratchy throat and swollen throat feeling....it turned out to be Hashimoto's thyroiditis which is closely associated with celiac disease in some people. It is another auto immune disease and the reaction to tiny amounts of gluten can set it off like the celiac disease. I also have to avoid corn and soya.

[SaraG in reply to Sappho]

Thanks Sappho - I've had whatever the 'usual' thyroid test is several times over the past few years and I've always been told the result is normal. A few doctors have commented that my neck looks a bit puffy, that I might have a slight goitre and it's possible that my thyroid is enlarged, but as long as the usual test result is normal, there is nothing more they will do as the test is confirmation that it's functioning normally.