So I Got Blood Test Back Today Saying I Have Coeliac Disease

[Trinastar]

So I got Blood Test Back Today Saying I Have Coeliac Disease and now I am just waiting for a call from the specialist for an appointment for more tests to confirm I have Coeliac Disease.

I didn't get a lot of information from my dr as to what my next steps are.

He told me to start a Gluten free diet asap but everything I have read regarding tests contradicts that...

Can any one share with me what they did following their positive blood results? Confused

I don't know a lot about celiac disease I have been trying to find info on the net I would really really love some help please....

[mushroom]

  On 2/10/2010 at 2:24 AM, Trinastar said:

So I got Blood Test Back Today Saying I Have Coeliac Disease and now I am just waiting for a call from the specialist for an appointment for more tests to confirm I have Coeliac Disease.

I didn't get a lot of information from my dr as to what my next steps are.

He told me to start a Gluten free diet asap but everything I have read regarding tests contradicts that...

Can any one share with me what they did following their positive blood results? Confused

Welcome, Trinastar.

Congratulations on actually getting a diagnosis; it puts you among the lucky ones. If you are to go to a specialist (GI?) he will probably want to do an endoscopic biopsy of the small intestine, and for that you need to continue eating a gluten diet despite what the doctor says. It may be he doesn't know a lot about celiac (the biopsy testing could be invalid if you stop eating gluten now), but at least he knew to test you.

You are also going to need testing for nutrient deficiencies, vitamins and minerals, and if you are deficient in Vitamin D a bone scan would be a good idea to check for bone density.

Stop eating gluten as soon as you have had the biopsy. Now would be a good time to start ridding your pantry of all gluten-containing goodies. Uopened bottles and jars can be donated to a food charity; I'm afraid the rest will have to be ditched. Be sure to read every label for wheat (including hydrolyzed wheat protein or any wheat variant) barley and rye. The only wheat named product that does not contain wheat is buckwheat which is made into a gluten free flour. You may know it as buckwheat groats. It is also recommended that you avoid oats because most oats are cross-contaminated, and some celiacs cannot eat even gluten free oats.

Be sure to scrub (and maybe reline) pantry shelves. If your household will be totally gluten free, toss any wooden or plastic spoons, scratched nonstick pans, plastic storage containers and colanders/strainers because these cannot be fully cleansed of gluten. Cast iron pans need to go through a cleaning cycle in the oven and then be reseasoned. Buy a new toaster. Check all your personal care products, soaps, lotions, shampoo and conditioner, lip gloss, cosmetics, toothpaste, for gluten and toss any that contain it. Before you know it, it will be time for your biopsy and your new gluten free eating. (Don't contaminate any of your new things with gluten ) But new dish sponges and cloths.

You will find many gluten free foods in supermarkets, at Whole Foods, Trader Joes, Costco, Walmart, Health food stores, and online. But in the beginning it is best not to rush out and buy gluten free replacments for everything. You will probably really need some bread and all seem to agree that Udi's is the best. Apart from that, and maybe some Tinkyada pasta, try to eat whole, unprocessed foods to give yourself a good chance to heal--meat, fish, vegetables, fruit, rice, nuts and seeds. Basically, shop the outside of the supermarket. You may find at first that you have problems with dairy, either all dairy or just lactose. If it is just lactose, you should be able to tolerate yogurt and hard cheeses, things that have been cultured.

Good luck on your gluten free journey, and let us know your biopsy results.

[Trinastar]

  On 2/10/2010 at 3:23 AM, mushroom said:

Welcome, Trinastar.

Congratulations on actually getting a diagnosis; it puts you among the lucky ones. If you are to go to a specialist (GI?) he will probably want to do an endoscopic biopsy of the small intestine, and for that you need to continue eating a gluten diet despite what the doctor says. It may be he doesn't know a lot about celiac (the biopsy testing could be invalid if you stop eating gluten now), but at least he knew to test you.

You are also going to need testing for nutrient deficiencies, vitamins and minerals, and if you are deficient in Vitamin D a bone scan would be a good idea to check for bone density.

Stop eating gluten as soon as you have had the biopsy. Now would be a good time to start ridding your pantry of all gluten-containing goodies. Uopened bottles and jars can be donated to a food charity; I'm afraid the rest will have to be ditched. Be sure to read every label for wheat (including hydrolyzed wheat protein or any wheat variant) barley and rye. The only wheat named product that does not contain wheat is buckwheat which is made into a gluten free flour. You may know it as buckwheat groats. It is also recommended that you avoid oats because most oats are cross-contaminated, and some celiacs cannot eat even gluten free oats.

Be sure to scrub (and maybe reline) pantry shelves. If your household will be totally gluten free, toss any wooden or plastic spoons, scratched nonstick pans, plastic storage containers and colanders/strainers because these cannot be fully cleansed of gluten. Cast iron pans need to go through a cleaning cycle in the oven and then be reseasoned. Buy a new toaster. Check all your personal care products, soaps, lotions, shampoo and conditioner, lip gloss, cosmetics, toothpaste, for gluten and toss any that contain it. Before you know it, it will be time for your biopsy and your new gluten free eating. (Don't contaminate any of your new things with gluten ) But new dish sponges and cloths.

You will find many gluten free foods in supermarkets, at Whole Foods, Trader Joes, Costco, Walmart, Health food stores, and online. But in the beginning it is best not to rush out and buy gluten free replacments for everything. You will probably really need some bread and all seem to agree that Udi's is the best. Apart from that, and maybe some Tinkyada pasta, try to eat whole, unprocessed foods to give yourself a good chance to heal--meat, fish, vegetables, fruit, rice, nuts and seeds. Basically, shop the outside of the supermarket. You may find at first that you have problems with dairy, either all dairy or just lactose. If it is just lactose, you should be able to tolerate yogurt and hard cheeses, things that have been cultured.

Good luck on your gluten free journey, and let us know your biopsy results.

Wow THANKYOU SO MUCH!!!!!

I don't know anything really about celiac disease at all.......I thought that it was only ingesting gluten that was the problem is that not the case???

Thanks again!!!

[mushroom]

Yeah, it is ingesting gluten that is THE problem; the other problem is that it can cause these nasty little other problems along the way. When they do the biopsy they are looking for damage to the villi which are little hair-like projections on the intestinal lining. If they have been damaged (which is considered to be the diagnostic standard for celiac) then you have likely lost the ability to digest lactose, because the lactase enzyme is produced at the very tips of the villi.

If the lining of the intestine is damaged it can create a lot of other problems too, one of the most significant being the inability to properly absorb nutrients, which is why nutrient testing is recommended. This is why so many gluten intolerants/celiacs are either overweight (the body thinks it is being starved because it is not getting nutrients and stores anything it can find) or underweight (because the body is not getting the nutrients and is not fighting back). There are also many other autoimmune diseases which can accompany celiac, which is why diagnosis early is so important. The other thing you should have checked is your thyroid function because gluten seems to upset the proper functioning of the thyroid gland in so many people.

Your best course of action is to read as much as you can about celiac and make yourself informed because so many of us have found that our doctors do not know as much about it as they should. There are days and days of reading on here alone. Dr. Peter Green's book Celiac Disease: The Hidden Epidemic is a great source of information.

[luvs2eat]

I was diagnosed by blood tests. My doc told me my levels were so high, he didn't see a need for biopsy unless eating gluten free didn't help my digestive symptoms. I started researching online and by the time the dietary nutritionist from the hospital got back to me, she said I had way more info on celiac than she did!!

I only wish I'd found THIS place sooner!! Here is where you can find an answer to ANY question.

[Raleigh333]

Welcome. I'm new to this forum but i've been aware of Celiac Disease for a few years. 3 yrs ago I had pos blood work and a normal biopsy. He said maybe a mild wheat allergy or IBS or mild mild Crohn's (I originally went to this doctor to follow up from an appendectomy-in which they also found out I had Hashimoto's, an autoimmune disease). I finally got a second opinion since symptoms have been worsening, and Jan 13 2010 I had positive bloodwork and was told to go gluten free immediately. I questioned changing my diet immediately because I wanted the abnormal biopsy this time around so I knew 100% that Celiac's Disease was the cause. They said that the few weeks on the diet won't change the biopsy, but I think it would mess up blood work. My doctor knew right away looking through the endoscope that there were abnormalities, and hearing that makes you never want to make a mistake in your diet! I was also ordered to get a CT scan which was normal and bloodwork that showed a slight Vitamin D deficiency.

I've only gone to 1 restaurant in the last month and that was Chili's last night. I checked their website before I went to make sure they would be prepared for me. They have an allergy menu that you ask for and they brought me my utensils wrapped up and seemed to be aware and familiar of procedures. All my other meals in the last 4 weeks I have cooked at home so I know every ingredient (this is tough for me-i was definitely eating too much fast food). I cook lots on the weekends cause there is not enough time for me during the week. Good luck with the transition!

[Trinastar]

  On 2/11/2010 at 4:10 AM, Raleigh333 said:

Welcome. I'm new to this forum but i've been aware of Celiac Disease for a few years. 3 yrs ago I had pos blood work and a normal biopsy. He said maybe a mild wheat allergy or IBS or mild mild Crohn's (I originally went to this doctor to follow up from an appendectomy-in which they also found out I had Hashimoto's, an autoimmune disease). I finally got a second opinion since symptoms have been worsening, and Jan 13 2010 I had positive bloodwork and was told to go gluten free immediately. I questioned changing my diet immediately because I wanted the abnormal biopsy this time around so I knew 100% that Celiac's Disease was the cause. They said that the few weeks on the diet won't change the biopsy, but I think it would mess up blood work. My doctor knew right away looking through the endoscope that there were abnormalities, and hearing that makes you never want to make a mistake in your diet! I was also ordered to get a CT scan which was normal and bloodwork that showed a slight Vitamin D deficiency.

I've only gone to 1 restaurant in the last month and that was Chili's last night. I checked their website before I went to make sure they would be prepared for me. They have an allergy menu that you ask for and they brought me my utensils wrapped up and seemed to be aware and familiar of procedures. All my other meals in the last 4 weeks I have cooked at home so I know every ingredient (this is tough for me-i was definitely eating too much fast food). I cook lots on the weekends cause there is not enough time for me during the week. Good luck with the transition!

i spoke to the hosp they couldn't find the referral from the dr so i

rang dr they said they sent it and it went thru so i asked them to

send it again and ring to double check it went thru......

i hate not knowing..........

This is all so very over whelming...

[ksangie]

  On 2/10/2010 at 2:24 AM, Trinastar said:

So I got Blood Test Back Today Saying I Have Coeliac Disease and now I am just waiting for a call from the specialist for an appointment for more tests to confirm I have Coeliac Disease.

I didn't get a lot of information from my dr as to what my next steps are.

He told me to start a Gluten free diet asap but everything I have read regarding tests contradicts that...

Can any one share with me what they did following their positive blood results? Confused

I don't know a lot about celiac disease I have been trying to find info on the net I would really really love some help please....

I'm in the same boat as you are, but with a little more research under my belt. I was told that I have Celiac disease by my PCP and also told to go on a gluten-free diet. I, too, researched and found out that isn't the way to go if you're also having a biopsy, so here I am patiently (well, not so patiently) awating a biopsy to confirm so I can go gluten-free. Between the symptoms, an IGA deficiency, and a sky-high IGG I'm pretty sure that I'll be postiing on this forum for a good long time.