Gluten Free Guerrillas
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Ttgl blood test

Hi all, I would really appreciate some help with this. I've been g/f for 6 months and still have a lot of ups and downs. I don't appear to have any vitamin definciencies though. I had another blood test to check that I wasn't still ingesting gluten and it came out at 13 (normal range being 0-10), could this be what it is? I thought I had been very careful, is it possible there's some cross-contamination going on?

17 Replies

That is certainly possible. If I was you I start again on a completely natural gf diet with nothing from the free from aisle and no processed food. I would stick to veg, fruit, meat, potatoes, rice, fish, beans, seeds, nuts and eggs and dairy if you can eat those. I would ensure I stop codex wheat, anything with barley malt and anything that contains 20ppm of gluten. It means checking every label but it is worth it. A lot of coeliacs have started to do this because we can't tolerate barley malt, codex wheat or even the 20ppm level.


Hi Becky. Very few people get a 0 score in the first year or so after diagnosis. It takes months for the antibodies to reduce, especially if you have a high score when diagnosed.

Tips that a lots of Coeliacs find useful in the early days are:

- have a separate toaster for your gluten free bread

- having separate spreads and jams to prevent dipping with gluten knives/spoons

- separate utensils, t-towels

- if sharing a kitchen then keep a separate gf area if space allows

- checking any lip products that you may have that contain wheat

(Generally the science community believe you'd need to ingest lots of lippy to have any effect but many coeliacs feel better giving these up)

- avoiding any products with codex wheat starch (many coeliac societies around the world class this as being gluten free yet some coeliacs, especially newly diagnosed, may find they react to this despite it being a product that has been washed especially to remove the gluten within it).

- Avoid eating oats in the early stages after diagnosis.

- check your over the counter medicines, most of these are fine but if in doubt ask the pharmacist. Only prescribed meds are 100% glutenfree.

- when eating out make sure you always speak to the manager and not the waiter. That way you will get a far better experience and service and be at less risk of cross contamination with your food.

Finally, if you haven't already done this, go through your kitchen cupboards and check that you don't have any staple products that contain hidden gluten.

We found that in the early days, first 12 months, it was worth steering clear of products that state 'produced in a factory/on a line that handle wheat'. With the new legislation we also avoid products that say 'no gluten containing ingredients' as this doesn't really mean anything legally and the products could be contaminated. Producers are allowed to use this term even when they have gluten products produced in the same facility.

We manage to eat out on a regular basis, cook from scratch and when really busy pick up ready meals from M&S or similar that are gluten free. Our last three tests have shown 0 but be aware that this doesn't mean that you have completely healed. It's a semi useful indicator to show whether you've ingested gluten in the last 6 weeks. You could still have a 0 blood test but still have extensive damage to the villi. As long as your blood tests shows the antibody level is going down this is an indication you are on the right track the and diet is working. :-)

For tips on gluten free hero products see out Facebook and Pinterest pages.

Hope this helps


Hi Becky, Yes as Mia says above the best way to go is to eat a really simple diet. Remember that food that says "Gluten Free" actually means may contain gluten up to 20ppm - it is one of those anomalies that catches us all out when we are first diagnosed. Also watch out for dextrose, dextrin, maltodextrose and maltodextrin - some of these may use wheat starch when they are made and those that do not often appear to cause some coeliacs minor gluten reactions. This may be because the equipment where they are manufactured are near to other gluten manufactured articles, I'm not sure but the fact that there are some problems occurring is worth remembering. Maltodextrin often may be made of corn one week and wheat another, there are no stable and consistent guarantees, so I always give it a wide birth. There are also many coeliacs who develop problems with potato. This is caused because so many 'gluten free' products contain large portions of potato starch and potato starch is currently used in too many recipes which means that there can be an overload of this particular starch. It is important for us never to rely too heavily on one food item as this may cause further allergies down the line and none of us want to end up having to be even more restrictive. It is a difficult transition when we initially have to cut out wheat, barley, oats and rye!


Thanks, this is all really helpful. I have taken everything on board. I hope that getting rid of all the gluten sorts me out, as so far I haven't fully felt the benefits of being g/f. Still very tired and sluggish :/


Hi Becky, I noticed you say you feel tired and sluggish. I initially found this as well and decided to have a Vitamin B12 test. On a scale between 220 and 900, I had 150. I initially had B12 injections, once a day for five days and then once a week for five weeks. You'll notice the difference. Remember, we're talking about absorption of the small intestine.It's not just being gluten free, additionally it's about how to keep up your nutrients while your intestine SLOWLY heals. There are two types of b12, I recommend Methylcobalamin B12 as it's better for absorption rate. Then after initial shots, go on to gluten free lozenges under the tongue as that's the best place for absorption. It's also a good idea to seek the help of a nutritionist and if you can, check your vitamin levels to see if you need to supplement these. Vitamin B12 deficiency is a completely different ball game and it can make a difference to those of us who have coeliac disease. I hope this will be of some help.


My husband went down to 5 stone when he was diagnosed eight years ago, he is still only 8.5 stone now. His consultant did tell him to be very careful some people are only Gluten free ( a part of wheat ) and some people are the full blown, Gluten, Wheat, Oats, Barley, Rye etc. He also developed a severe reaction to Sea Food at the same time, he has a very physical job and should look like a body builder but alas he does not gain muscle tone etc,, so we have decided on Calcium Tablets and Multivitamins etc, he is always tired. Saying that the consultant did tell him that over time he may become more likely to have the odd bit here and there with no adverse reactions, so give it time. Labels may say Gluten Free but it doesn't always mean Gluten and Wheat Free, but by reading the labels a lot of food is Gluten and Wheat Free anyway without the extra cost. Hope this helps


Just to confirm, loobylou123: gluten is also in barley and rye, not just wheat. Oats have a protein (that's not dissimilar to gluten) that can cause problems in some people, although the most common problem with oats is caused by cross-contamination (often being milled/ground in the same factory as wheat, barley and rye).

Sorry to hear about husband - hope he's gradually improving.


Hi Becky, I agree with the others and I'd be careful with oats even the pure ones, as you've only been diagnosed for 6 months I don't expect that you've introduced them yet.

A very interesting link by our friend Lynxcat and the link at the bottom of the article about caramel colour is worth reading because caramel colour E150b,c and d, can be derived from wheat and is not recommended for coeliac in some countries. Even Citric acid E no 472 can be a wheat derivative so for those who are very sensitive to gluten it is a minefield.

Lastly I'd consider keeping a food diary to help indentify foods that cause your up's and downs and I hope that you start to feel better soon.


Er... 13's pretty damn good actually. You've only been diagnosed for 6 months! Mine was 142 when I was diagnosed and I'll be very happy indeed when I have my blood test for the 1 year mark. I would say keep on doing what you're doing!


Yes I did think it was pretty good actually - which made me wonder why I still feel so delicate. My biopsy showed quite severe gut damage, so am I just going to feel a little delicate whilst it's healing?


Be careful how much dairy you have, until your bowel etc has healed completely it will go straight throe and your Calcium Absorbtion will be very low.


hi becky i was diagnoised 18monthes ago and had symtoms for ages they told me was my body cleaning it self from gluton still have a few blips but you have to be so carefull of cross cotamination to i find it hard some times and do a lot meals my self to be safe good luck xx


and i carnt eat yogert eather that sets me off x


Thanks, all advice is really helpful and it's good to see how different people were coping in the first year of diagnosis. I'm off dairy so maybe I should look into compensating for that loss of calcium. What I find odd is that the first 2/3 months after diagnosis I felt generally okay, but now the tiredness is back with a vengeance!


hi ,i have been a coeliac for eight years now,but still have a problem with corn and rice.i get tired. is this part of being a coeliac


Hi Becky - something else to consider cutting out is soya (in numerous products). It doesn't contain gluten but it can cause problems for those who are highly sensitive to gluten (as with oats, it's believed to be caused by being grown in the same fields as wheat/rye/barley, and then manufactured/processed using the same factory equipment).

It's horrible when you find yet another ingredient you might have to eliminate from your diet (even temporarily) but it might be one of the causes behind your ongoing fatigue. But only 6 months in to going GF and with a score of 13 on tTGA, it sounds like you're doing really well. Keep going! :)


Snap Becky! First few months ok and now having problems. I seem to be able to have milk, cheese and cream but not yogurt!

Also Im getting just a background dull ache in my tummy as if there is something that is niggling it but not enough to give it a full blown attack.

Im starting to wonder if its GERD as its as though everything feels inflamed. When I have taken Omeprazole it has not done much good in the past as it feels as if something is irritating the whole of my insides - does that make any sense?


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