Celiac? Really?

[chedz]

Hi guys

I'll cut my story short as it has gone on for ages now. Basically I went to my doctor after months of feeling very tired and confused getting progressively worse and I had been suffering from hives for around 6 weeks (popping up anywhere on my body and lasting 20 mins, itching burning then going and popping up somewhere else).

Dr did a generic blood test, thyriod, iron, B12, liver function, folate etc and it turns out I am folate deficient? This isn't due to diet, alcoholism or pregnancy which are the most common causes so Dr decides to test TTG for celiac?

I have mild digestion problems which I put down to IBS and irregular bowels but nothing major.

My problem is that my Aunt was celiac and was very poorly, weight loss, vomiting, incontinence etc and I am nothing like that. Is my Dr just being cautious or is there really a chance I could be? even with little symptoms?

Also my daughter was suspected celiac a few months ago and tested (blood test negative) as she was having similar symptoms. If I am should I push for a biopsy?

Any help would be great, obviously I am concerned about this.

Chedz x

[Takala]

Your doctor is being wise and cautious.

Folate is a B vitamin, and therefore if you had problems absorbing nutrients this could be a symptom of damage to your intestines.

About 30% of the population carries the genes which could pre dispose them to develop celiac. Of those, only a small % go on to it. Obviously, having a close female relative increases the chances of at least having inherited the genes (more women than men get auto immune diseases).

The previous generation of your aunt and parents and grandparents usually were not diagnosed until they had had the disease for years and were deathly ill at that point. The disease may have been around for centuries, but it was not until the World War II era and food shortages that doctors were able to link eating wheat with wasting away. Also, it was previously erroneously thought that children out grew it and could go back to eating wheat, pasta, cereals, etc, as adults. Antibiotics, another 20th century invention, have also increased the survival rate of young people who would have succumbed to infections, therefore increasing the lifespans of people long enough to reproduce and pass on the genes.

It's not unusual for people to have negative blood tests, even if they have symptoms. There is a lot about celiac and gluten insensitivity which is not completely understood yet.

Get tested (and your daughter) to the best of your abilities, but if you still have symptoms and no answers after the tests, go ahead and try a gluten free diet trial, and see what happens. If you are told to go off gluten before the test, that is backwards, you need to be on it. This is obviously a problem with some medical systems, where they like to make you wait for months for an appointment, if you are feeling poorly.

[mushroom]

Hello, and welcome.

Well, actually, your folate deficiency could be due to diet, due to the gluten in your diet blocking its absorption Folate deficiency is common in celiacs. You have a pretty hep doctor to be testing you for these things at an early stage instead of letting you linger for years. What was the result of your genetic testing, or do you know yet? It is quite possible that your symptoms are caused by gluten intolerance - GI symptoms can range from non-existent to mild, all the way to extreme. If you have a family history of celiac disease your chances of having it are increased since it is genetically based. Even non-celiac gluten intolerance is associated by many researchers with specific genes. As far as having the biopsy, that is entirely up to you and your doctors. It can sometimes show other problems (although you apparently don't have great GI problems). Tiredness and confusion (many posters describe it as 'brain fog) are common symptoms. Hives could be from gluten or some other food. I guess we will have to await your results. But even if they are negative, if celiac (gluten sensitivity) has been suspected it is a good idea to try eating gluten free and see if it makes a difference for you.

Keep us informed when you get your results.

[chedz]

Thanks guys, very informative

I have had my IgA result which was 1.4 (range 0.8 - 2.3). I presume this is normal as it's within the labs normal range?

I'm unsure if there are anymore results to come as my doc is away on his hols and the receptionist had no clue..... I did phone the lab though who said it can take up to 6 weeks for my results as they have to send them to a second lab!! All a bit confusing but I suppose I'll just have to wait.

On your advice I have stopped eating wheat, just to see if that was causing the hives but I am still suffering. I think I'll try cutting out gluten also and see how that goes

Thanks again x

[ravenwoodglass]

Thanks guys, very informative

I have had my IgA result which was 1.4 (range 0.8 - 2.3). I presume this is normal as it's within the labs normal range?

I'm unsure if there are anymore results to come as my doc is away on his hols and the receptionist had no clue..... I did phone the lab though who said it can take up to 6 weeks for my results as they have to send them to a second lab!! All a bit confusing but I suppose I'll just have to wait.

On your advice I have stopped eating wheat, just to see if that was causing the hives but I am still suffering. I think I'll try cutting out gluten also and see how that goes

Thanks again x

Since your daughter also has similiar symptoms do be sure to do a trial of the diet for her also after all the testing is done. False negatives are not uncommon on testing and are even more common for children. Symptoms can be sporatic GI wise for years before they become a relentless issue. So only off and on IBS type symptoms is not uncommon.