Help - Waiting For Results

[Smarts]

I guess I'm just impatient, but I am waiting for blood work to come through for gene testing for celiacs. It's a month until my appointment with my doctor and I get the feeling that no one will contact me before then. My story is really really long so I will try to keep it brief. I don't remember when I didn't have heartburn and reflux problems, and my Mum and maternal grandmother spent a lifetime whingeing about their aches and pains, IBS, indigestion and other health complaints. In my teens I had several periods of extreme ill health, feeling sick, dizzy exhausted. In my early 20's I got really sick, gastritis, really painful joints, severe depression, headaches, fogginess. I asked my GP if my stomach problems were causing the other symptoms and he told me I was being stupid!!! I was variously diagnosed with chronic fatigue syndrome, clinical depression and I am classified as having Bipolar II. I'm now 40 and have had episodes over the past 20 years when those symptoms have returned, but the stomach issues (including IBS) and migraines have continued, I'm always tired, catch every cold and periodically get patches of eczema (most recently a bad outbreak all over my face in May) and mouth ulcers. I never considered it a symptom until now but my teeth are discoloured which dentists have told me is inside the enamel. I gave up pestering doctors a long time ago, accepted anti depressants and stomach medication and got on with my life.

3 years ago I cut right back on processed carbohydrates such as pasta and bread, to lose weight. I lost heaps of weight, the heartburn stopped and so did the headaches. But I am human and slowly those foods returned to my diet.

Last year my stomach was really upset again so my GP referred me to a gastroenterologist. Blood work showed that I was seriously iron deficient, but I tested negative for gluten intolerance. An endoscopy and colonoscopy showed up nothing other than the reflux. But my doctor was determined to get to the bottom of the iron deficiency, so he ran a capsule endoscopy last month. This showed patches of flattened villi in my small intestine.

For the past 3 weeks I have avoided eating any gluten containing foods. My children have also chosen to avoid gluten (one has suffered from reflux and IBS since she was a baby - the other is very moody and irritable and suffers lots of colds). To date the only changes I have noticed are that the eczema I was suffering from (which didn't completely clear up on steroid creams) has gone, as have cracks in the corners of my mouth.

Does this sound like Coeliacs Disease?

[AlysounRI]

But my doctor was determined to get to the bottom of the iron deficiency, so he ran a capsule endoscopy last month. This showed patches of flattened villi in my small intestine.

The flattened villi is most defintiely celiac disease.

But everything else you mentioned is indicative of it as well.

There are about 300 symptoms associated with Celiac.

Has your doctor run a thyroid test too?

Some of what you have mentioned can be linked to hypothyroidism.

He should also test your B12 levels.

Low ferratin is not the only cause of no energy.

Taking a B12 supplement has helped me amazingly as well as it has A LOT of other people here.

[Tina B]

I guess I'm just impatient, but I am waiting for blood work to come through for gene testing for celiacs. It's a month until my appointment with my doctor and I get the feeling that no one will contact me before then. My story is really really long so I will try to keep it brief. I don't remember when I didn't have heartburn and reflux problems, and my Mum and maternal grandmother spent a lifetime whingeing about their aches and pains, IBS, indigestion and other health complaints. In my teens I had several periods of extreme ill health, feeling sick, dizzy exhausted. In my early 20's I got really sick, gastritis, really painful joints, severe depression, headaches, fogginess. I asked my GP if my stomach problems were causing the other symptoms and he told me I was being stupid!!! I was variously diagnosed with chronic fatigue syndrome, clinical depression and I am classified as having Bipolar II. I'm now 40 and have had episodes over the past 20 years when those symptoms have returned, but the stomach issues (including IBS) and migraines have continued, I'm always tired, catch every cold and periodically get patches of eczema (most recently a bad outbreak all over my face in May) and mouth ulcers. I never considered it a symptom until now but my teeth are discoloured which dentists have told me is inside the enamel. I gave up pestering doctors a long time ago, accepted anti depressants and stomach medication and got on with my life.

3 years ago I cut right back on processed carbohydrates such as pasta and bread, to lose weight. I lost heaps of weight, the heartburn stopped and so did the headaches. But I am human and slowly those foods returned to my diet.

Last year my stomach was really upset again so my GP referred me to a gastroenterologist. Blood work showed that I was seriously iron deficient, but I tested negative for gluten intolerance. An endoscopy and colonoscopy showed up nothing other than the reflux. But my doctor was determined to get to the bottom of the iron deficiency, so he ran a capsule endoscopy last month. This showed patches of flattened villi in my small intestine.

For the past 3 weeks I have avoided eating any gluten containing foods. My children have also chosen to avoid gluten (one has suffered from reflux and IBS since she was a baby - the other is very moody and irritable and suffers lots of colds). To date the only changes I have noticed are that the eczema I was suffering from (which didn't completely clear up on steroid creams) has gone, as have cracks in the corners of my mouth.

Does this sound like Coeliacs Disease?

Absolutely! Flattened villi coupled with iron deficiency anemia. Just do the gluten free diet and you are done with follow up. Nothing else needed. You already know it makes you feel better. If you are strict about the diet I wouldn't be surprised if a lot of the other vague symptoms also go away. Since celiac causes malabsorption you end up with all symptoms related to malnutrition. ie; bruising from malabsorption of vitamin K and mouth ulcers and skin lesions from malabsorbing various mineral and nutrients.

[Smarts]

Has your doctor run a thyroid test too?

Some of what you have mentioned can be linked to hypothyroidism.

He should also test your B12 levels.

Low ferratin is not the only cause of no energy.

Taking a B12 supplement has helped me amazingly as well as it has A LOT of other people here.

Thanks guys for your replies. I was at a party yesterday. I refused the finger food of mini quiches and told my friend I might have celiacs. Suddenly 2 women turned around who had overheard and asked me why I thought that. I told them my story, to which they shook my hand, welcomed me to the club and led me to a table with gluten free food on it. I'm just wondering what happens if the doctor comes back and says I don't carry either gene? I'm hoping he will still want to explore what has caused the flattened villi. He pursued the iron deficiency like a dog on the scent - the only doctor who ever has.

When I was in my teens and 20's I was so sick (bruising easily too) so I was given blood tests which included thyroid. Everything always checked out fine (but I lived in the UK then and no one ever seemed interested, I now live in Australia, where doctors actually listen). When I lost a heap of weight 4 years ago I asked my doctor to check again and everything came back good (apart from my iron as always). In the past 3 months I have been taking Vit B supplements (incl B12) and iron supplements because I was just feeling so drained with the start of winter. It has really helped, with menstrual symptoms too - so I believe I may well have a deficiency there too.

[Skylark]

Your symptoms sound gluten-related to me, including the bipolar II. It's hard to get the antibodies to show up, and lots of people are gluten intolerant without being celiac.

There ARE people who are gluten intolerant without DQ2 or DQ8 so even the genetic tests don't rule out gluten sensitivity. The only way to know for sure is to try the diet strictly for a few months. You already have some improvements in you skin so keep at it!

[ravenwoodglass]

I'm just wondering what happens if the doctor comes back and says I don't carry either gene?

You continue on the diet and heal. Not all celiacs are DQ2 or DQ8. I am one of the oddballs who isn't. Gene testing is a relatively new science and is not the be all and end all of diagnosis. Your response to the diet is.

[tarnalberry]

That's why I don't like the gene test - it does *NOT* rule out celiac like people think it does, because they don't test for all the known genes (and don't know if they know all of them).

Anywho - make sure that you are *ENTIRELY* gluten free (including dealing with possible contamination issues both from store-bought items and in your own house). It make take a few weeks to notice the change, and it make take months for it to be a big change. Have patience and perseverance.