Pre Diagnosis

[stevemac1]

Hi there, please provide some experiences if yours are similar. I am writing this for my father who is 53. My dad has been suffering from low blood pressure and unexplained anemia, doctors can't seem to work out why he is experiencing anemia, even the hematologists didn't seem too worried. It is frustrating having test after test at the doctors and being referred places but not know what is causing these symptoms. Symptoms my father is experiencing is bloating, feeling full after a small meal, weakness, breathlessness, dizzyness regularly, often fainting or being so dizzy and weak he cannot stand up. My dad feels that eating bread, pasta, beer etc makes these symptons worse. He had a big drink on saturday at a party, drinking lots of beer! On sunday, dizzyness was awful - there was no actual passing out which has happened before but he was so weak and dizzy that he knew he had diarrhea but could not make it to the doctors in time. Me and my mum have researched symptons my dad is showing and have thought he may have celiac disease.. we really hope it is this and nothing serious. This is starting to make me feel ill the amount i am worrying, please provide any similar symptons.. we have enquired for the doctor to provide some tests to my dad. Thanks

[trents]

Your dad has several classic symptoms of celiac disease. There are serum antibody tests designed specifically to check for celiac disease and then there is also an endoscoy with biopsy to microscopically check for the actual damage done to the villi that line he small bowel, this damage being the hallmark of celiac disease. The serum antibody tests are designed to detect the inflammation that is causing the damage to the villi. Celiac disease is an autoimmune condition, i.e., the body is attacking it's own tissues when gluten is ingested. 

If the antibody tests are strongly positive, the physician may declare that your dad has celiac disease based on the antibody tests alone. Otherwise, he may order the endoscopy with biopsy.

Hopefully the physician will order several different antibody tests to account for the fact that not everyone's immunes system responds in the same way to celiac disease. Yet, we often find that physicians will only order the tTG-IGA test. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

I would push the physician to order the tTG-IGA, Deamidated gliadin peptide (DGP IgA and IgG) and total serum IGA to cover the bases well.

It is important that your dad not cut back on gluten consumption until all testing is complete.

[Wheatwacked]

I've had a few episodes where out of the blue, suddenly I got nauseous, my lights went out and it felt like what I remember the nitrous oxide at the dentist felt like, spriraling down. Then I threw up had diahrea and got real sweaty and it eventually passed.

I can't call it Low Blood Pressure but something happened and there is no food pattern. Once it happened drinking wine while leaning on the kitchen counter; once it happened sitting watching TV eating salami slices. It has not happened recently since doing seriously raising my vitamin and mineral intakes. I think it stopped once I raised my potassium intake to the DV of 4.7 grams a day. It lowered my Systolic pressure. Low potassium is a nutrient of concern in most of the world because not enough causes high pressure. It is the logic behind the DASH diet and the reason they raised the DV potassium from around 3 to almost 5 grams a day a few years ago. Too much choline, around 7 grams a day will cause side effects of low blood pressure and fishy body oder, but it you have to eat 47 eggs or 11 pounds of top round beef to get that much.  Choline Fact Sheet for Health Professionals

Patients on bp meds can lower their diastolic blood pressure to much while focusing on systolic pressure.

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these stiffened conduit arteries lead to an increase in pulse pressure and pulse wave velocity, causing an elevation in SBP [systemic bp]and a further decline in DBP [diastolic bp]

As @trents mentioned his symptoms are classic for Celiac 1% of population and Non-Celiac Gluten Sensitivity (10% of population). Don't waste time. He should get tested then start GFD and a vitamin replenishment program.

Without thinking, he is vitamin D deficient. If his homocysyeine blood test is high he is deficient in B1, B6, B12, choline or folate. Anemia is often B12 deficiency. 

People get angry when you suggest a gluten free diet. Gluten is addictive and some people have withdrawal symptoms for a short while, not unlike alcoholism.

Kudos for being so concerned for your Dad. When the time comes maybe offer to go gluten free with him as support. Get tested yourself. It is estimated that 10% or more of first degree relatives also have Celiac Disease but don't realize the symptoms they ignore are not normal growing up.

[cristiana]

Hi Steve

A very warm welcome to the forum.  

You and your Mum may well be onto something here.  Anemia is very common in coeliac disease. 

You ask if anyone here has had similar symptoms:  Well, I too had unexplained anemia.  I felt extremely breathless walking up hills.  I remember going on a walk one Easter and people nearly double my age were overtaking me.  Not good when you are in your early 40s!

The fact that your father has diarrhea is another thing I got prior to diagnosis. 

His dizziness could be to do with iron anemia and other deficiencies.   If his diarrhea is frequent his electrolytes could be out of whack and that would also likely contribute to feeling dizzy.

With women, iron deficiency is quite common during childbearing years so when that presented as my main symptom no-one thought to test for coeliac disease.  However, a year or so after my eventual diagnosis my GP told me a male with anemia came to the surgery to seek treatment and she thought of me immediately, ordered a full coeliac panel et voila, coeliac disease!

So hopefully you have managed to get the tests you want from your GP.   

Playing the detective here, with the timing of your post and also the spelling of "Mum" I am wondering if you are British? If so, do look at the Coeliac UK website if you run into any brick walls with testing.   They provide very good advice for getting tested under the NHS, and ways of getting around any obstacles that might present themselves.   

Also, just to say that in Britain it so worth your father finding out if he is a coeliac rather than just going gluten-free.  As a rule, in the UK, one is assigned a good care package if one is diagnosed: a nutritionist, DEXA bone scans (coeliacs can be more prone to osteoporosis) and regular blood tests and check-ups with a gastroenterologist to check for adherence to the diet, complications etc.

Do come back to us if we can help further.

Cristiana