Seeing the current question from Pretender re diagnosing 'super sensitive coeliacs' got me searching for a previous posting that I remember seeing by GFG:
Now here's my view, I don't believe in various catagories of sensitivity, deserving a special label, in relation to coeliac disease. Contentious though this view may be.
There are individuals who have lots of unpleasant symptoms relating to what they eat and how it's digested and deposited in the bathroom and there are others who don't experience any gastric symptoms whatsoever. They may however, experience symptoms in other parts of the body which are not initially thought to be linked to coeliac disease, but are later found to be part of this e.g. gluten ataxia, various aches and pains.
So something prompts the doc to carry out an antibody blood test which then leads to a detailed biopsy taken from specific areas of the stomach. This is analysed and coeliac disease is diagnosed.
Now it may be that the individual who experienced all the 'typical' coeliac disease symptoms does not display large amounts of damage to the villi, and it's not obvious that this person has coeliac disease until the biopsy is back and confirms this.
Then you have the 'atypical coeliac' who, although showing no stomach symptoms whatsoever, has such flattened villi that the surgeon carrying out the procedure can confidently diagnose coeliac disease, on sight, without waiting the biopsy results.
Now throw into the mix the fact that the Coeliac (A) with minimal damage to the villi ate large quantities of gluten containing foods prior to diagnosis and the Coeliac (B) wasn't fond of breads, cakes and focussed on fresh foods which were naturally gluten free and only ate a small quantity of gluten.
ADOPTING A GF DIET
Both Coeliacs start their gluten free diet immediately after diagnosis. They are clued up, make the odd mistake but generally 'get it' and eat 'gluten free'; substituting with some free-from foods which may or may not contain codex wheat starch.
Coeliac (A) feels much better straight away. Blood tests reveal deficiency in calcium so supplements are taken. They adopt the GF lifestyle, but if 'glutened' when eating out, get the typical 'off to the loo' type symptoms, feel very unwell, thumping headache and can be sick for several days. This happens several times a month although they can't pin down the source of the gluten. Cross contamination and 'sensitivity' seem to be possibilities.
Coeliac (B) feels a bit better. The ataxia symptoms go but the other nagging aches and pains remain and further blood tests reveal very low Vit D. Injections improve this and aches and pains improve. Tests are undertaken to rule out Lactose and Fructose intolerance. These are negative but a lactose free diet is now followed to aid healing. Whilst still sticking clear of processed GF products Coeliac (B) is still not back to normal though even though a 6mthly blood test shows that the GF diet is being followed correctly.
At the 12 month mark Coeliac (B) is still not feeling 100% so a further look at the stomach is scheduled. This shows (on the Marsh scale) that areas are still not healed despite best efforts. The Dietician advises that Coeliac (B) is doing everything right and that some Coeliacs can take upto 2 yrs to heal; it's very dependent on the amount of damage present at diagnosis.
Has Coeliac (B) been gluten intolerant for a longer period of time that Coeliac (A) which has resulted in more damage? Could be, but not possible to prove.
Coeliac (B) now takes steps to remove other irritants after researching as much as possible and noting that there is a school of thought that if gluten is removed the body can sometimes look for similar substance and mistakenly react to that.
Now, after going 'gluten free' if Coeliac (B) is glutened when eating out they experience a fairly immediate reaction of 'bloating' and discomfort. Despite experiencing no symptoms pre diagnosis. But still no 'rush to the loo' symptoms. The bloating subsides fairly quickly with moving on to a light diet and drinking lots of water. Sometimes they are not sure whether they just ate too many chickpeas or similar or have eaten gluten.
So, if such a thing as a 'super sensitive Coeliac' exists is it :
- Coeliac (A) who showed minimal villi damage
- Coeliac (B) with totally flattened villi.
or is it
- the Coeliac with the most typical reaction and symptoms to ingesting gluten
- the Coeliac who never experienced symptoms but after removing gluten now gets bloating and discomfort if accidently eating gluten because they removal has triggered a sensitivity?
If you consider yourself 'super sensitive' what state were your villi in when you had your endoscopy? Do you react if you eat codex wheat starch?
Solution: Avoid all processed foods and eat a nice healthy gluten free diet. Job done.
If your endoscopy diagnosis revealed severely damaged villi then be prepared for it to take some considerable time for your gut to recover. It probably took a good few years for the damage to occur. Providing you have a handle on the gluten free diet and manage this sensibly you're on the right road, you don't need to pick up an unwanted label of 'super sensitive'
Get regular blood tests to see how gluten free you are. You could be making a simple mistake and eating something without being aware. Easily done.
Take vitamin supplements, eat healthily and thank your lucky stars that you've been diagnosed and have a chance to redress the damage that's been done so far and hopefully avoid the other risks associated with coeliac disease.
We should be thankful that we can manage this particular disease simply via a diet rather than have to take toxic drugs that can cause many other problems.
Happy gluten free eating, however your react!