Why I Need A Diagnosis

[Kat70R]

Hello,

This forum has been such a blessing to me since I found it! I have a couple questions/thoughts.

First of all, is it a fact that celiac runs in families? My Grandmother died of Addison's and my mother had major stomach issues, severe anxiety her whole life than passed on from colan cancer at 68. I have several symptoms I have mentioned before, major fatigue started at 16 and stomach problems since early childhood that cleared up when diary was eliminated, now C with cramps at times but not always! bloating after wheat/gluten definitely. Sometimes I get this dizzy feeling and can not think- brain fog? barely function so tired, forget things, depression/anxiety, bruise easily etc- there is more. My thoughts recently have been that perhaps I am at least a 3rd generation?

Been almost gluten-free for 3 or so years. the reason that i need the diagnosis is this: my hubby does not seem to believe anything unless it is a proven scientific fact. Blood tests = facts! Going gluten free is inconvenient, and he does not seem to really support it.

i have a son with autism, gluten-free is recommended for these children. I have wanted to put him on the diet for 3 years now but butt heads with Hubby. He does not believe that it will help our son and thinks it is more trouble and inconvenience than it is worth.

If I have a diagnosis from a doc, perhaps he will have more respect for the diet and agree it may be best for our son too. I am desperate to help my son through nutrition, not drugs.

Also, I really want to feel vindicated for all the years that I have been misunderstood or looked upon as lazy, wondered myself if it was true and why i have such a hard time feeling normal, wanting to do things but not able too, it would be nice to know that it really has been a real medical issue and all the tests over the years and doctors never caught it, if not maybe I am just a hypochondriac which i hope is not true.

[mushroom]

Yes, celiac does run in families - it is genetically based. All it takes is a gene from either parent (or sometimes you get one from each), and a triggering event to set the disease in motion. This is why the genes are classified as predisposing rather than diagnostic. From your family history I would say that it does seem to run in your family. Have you, yourself, ever had any testing done, i.e.,, had a celiac blood panel of tests for the disease? And how did you make the decision to quit eating gluten?

Of course, you realize that the fact that you are almost gluten free makes diagnosis very difficult, as the antibodies will no longer be in the blood stream and your small intestine will/should have healed. significantly. With a gluten "lite" diet you probably do not have enough activation to get a positive test. You would have to go back on gluten for two months at the equivalent of 3-4 slices of bread a day to reharm yourself sufficiently to get a positive test

[Kat70R]

Thanks Mushroom, I actually never completely gave up gluten, still ate stuff like oats/granola, whole wheat bread and pasta, smaller portions and not everyday, I guess that I was more gluten lite than gluten free.....for a couple of weeks I have been trying to eat more for the past week and it is making me so cloudy and tired! I don't know if I could do 4 slices of bread a day- eeek! i don't know if I can do this for 2 months, omgosh! even right now I am shaking and my mind is cloudy.

if for instance the blood tests are not accurate the biopsy would be right? I don't think that I would still have all these symptems if i was healed up.

[Kat70R]

Sorry Mushroom, i hit reply too fast. I have never had a celiac panel but just about everything else!

I have attempted to stop gluten for about 3 or so years, after a friend of mine went raw and had a complete health turn around for the better. She told me to first give up dairy because that was why I was congested, I could not believe it but in 2 weeks my stuffed up nose was all clear! Amazing! I had given up real milk several years earlier in favor of yogurt and some cheeses, my D not C got better but the allergies never did until I gave up the yogurt and cheese (do still use a bit of Parmesan and Romano and they do not seem to disturb me.....

[ravenwoodglass]

if for instance the blood tests are not accurate the biopsy would be right? I don't think that I would still have all these symptems if i was healed up.

False negatives are common in both blood and biopsy. Some have positive blood but negative biopsy and some have positive biopsy and negative bloods and some will have a false negative for both. When the tests are positive they are positive though. You could try having blood drawn now and if the results are negative then do the challenge full force and have it redone after a couple of months. Even a low positive is a positive so just let your doctor know that you have been gluten light and that you are going to challenge and let them know what the results of the challenge are. A food and symptoms diary can be helpful in the process.