Newbie

[Christine0125]

I just received the blood test results which showed positive for celiacs. I have suspected it for several months and part of me is relieved with the diagnosis in hopes that it will take care of many of my symptoms: frequent nausea, gas/bloating, mild anemia, headaches and eye issues in the past which I believe are related. I'll be making an appt with a GI doctor as a next step. In the meantime I've stocked up on gluten free items.

Some initial questions I have (I'm sure I'll have lots more upcoming):

1) Should my kids be tested even without obvious signs of gluten issues?

2) Do I really need to get an endoscopy or is the blood test enough? I suspect the GI doc will recommend it but medical procedures make me very anxious.

3) Right now I'd say my overall symptoms are somewhat mild based on what I've read online as I've been able to fully function with the symptoms for some time. Is it almost definite I'll become more sensitive to gluten the longer I'm gluten free? I guess I'm asking if there is any way to predict how sensitive a celiac I'll become?

Thanks. I look forward to learning a lot here.

Christine

[sharilee]

I was diagnosed with celiac myself a little over a week ago after confirmation from an endoscopy. I have a fear of medical procedures myself and the endoscopy was very simple, no side effects whatsover or pain after the procedure. To answer your question, a blood test is not enough (I did alot of research on this after my blood tests came back positive). An endoscopy is the only way to confirm celiac.

I did not have any severe symptoms at first. I am hypothyroid and have Hashimoto's thyroiditis and my thyroid meds were not working properly so the doctor ran blood work for celiac even though I had very mild symptoms. The blood work was positive. Then before I had the endoscopy (I kept putting off because I could live with the mild symptoms) I had a very stressful time at work and my nine year old dachshund died of cancer and suddenly I was having problems every day (I also read extreme stress and emotional stress can make symptoms worse). Being sick everyday finally got myself into the doctor for the endoscopy. It got to the point I could not handle the severe symptoms.

So even though your symptoms are manageable now, they can get worse.

The GI doctor did say not to be gluten free before the endoscopy because once you go gluten free you body begins to heal itself and being gluten free can affect the endoscopy.

[Christine0125]

Thanks Sharilee. I made an appointment for 3/22 with a GI doctor who will likely order the Endoscopy. I'm happy to hear it was an easy procedure. Were you prescribed steroids to help with the healing? I'm wondering how often that is done.

[sharilee]

Thanks Sharilee. I made an appointment for 3/22 with a GI doctor who will likely order the Endoscopy. I'm happy to hear it was an easy procedure. Were you prescribed steroids to help with the healing? I'm wondering how often that is done.

I wasn't prescribed steroids to help healing. Good Luck with the appointment on the 22nd.

[lucky97]

Hi,

I was diagnosed with Celiac at age 45 with no prior history in my family, but a significant, sudden liver problem that led them to the Celiac.

The endoscopy is pain-free (and outpatient). It is a standard procedure. For the record I also had a liver biopsy (that came first to rule out liver tissue problems--it did) and that was equally pain-free...all relative to what these procedures are for of course.

Strict adherence to a gluten-free diet will usually be all that's needed for intestinal healing but it can take awhile (I'm going on a year-and-a-half and not yet fully healed but all the readings keep improving). Cutting the main gluten sources out is pretty easy...the "hidden" gluten and cross-contamination are real issues but, like everything else, one gets the hang of a clean, gluten free diet and adjusts.

Steroids and the like are not the first line of defense; in my case the specialist was happy to NOT put me on steroids because it looked like I had a liver auto-immune disorder but he wasn't convinced...which led him to keep looking and then he found the Celiac, the base of my medical problem.

Good luck in all your gluten free adventures!

[Roda]

I just received the blood test results which showed positive for celiacs. I have suspected it for several months and part of me is relieved with the diagnosis in hopes that it will take care of many of my symptoms: frequent nausea, gas/bloating, mild anemia, headaches and eye issues in the past which I believe are related. I'll be making an appt with a GI doctor as a next step. In the meantime I've stocked up on gluten free items.

Some initial questions I have (I'm sure I'll have lots more upcoming):

1) Should my kids be tested even without obvious signs of gluten issues?

2) Do I really need to get an endoscopy or is the blood test enough? I suspect the GI doc will recommend it but medical procedures make me very anxious.

3) Right now I'd say my overall symptoms are somewhat mild based on what I've read online as I've been able to fully function with the symptoms for some time. Is it almost definite I'll become more sensitive to gluten the longer I'm gluten free? I guess I'm asking if there is any way to predict how sensitive a celiac I'll become?

Thanks. I look forward to learning a lot here.

Christine

1) Yes your children, parents and siblings(all first degree relatives) should be screened via blood work. A full celiac panel includes: total IgA, IgA/IgG tTg(tissue transglutaminase antibody), IgA EMA(endomysial antibody), IgA/IgG DGP(deamidated gliadin antibody) and IgA/IgG AGA(antigliadin antibody). The last one is being replaced by the newer more sensitive DGP test.

2) Some doctors will diagnose celiac based on blood work alone and others still want the biopsy. Here is a really good article/interview with Dr. Fasano for you to review. He is a leading celiac expert and no longer believes that the biopsy is always necessary for diagnosis. It's just going to take the rest of the medical community a while to catch up.

Open Original Shared Link

The scope/biopsy really isn't that bad at all. They will biopsy for celiac(minimum 8-11 samples from different areas need to be taken) and also evaulate the esophagus, stomach and fist part of the small intestine(duodenum) for other things as well. I've had two, first one when I was diagnosed and another 1.5 years later. I had developed new issues so I had it repeated. My villi were healed but they found an ulcer. So I'm glad I had the initial one done as a baseline.

3) Symptoms or lack of, don't necessarily correlate to the amount of damage to the villi in the intestine. There are a few on here that were completely asymptomatic while eating gluten but had villi damage. The general concensus is that, yes the longer you are off gluten the more likely you will become more sensitive if you accidently consume it. Think of it this way: you body has been fighting it off all along. When you remove it it gives your immune system a break a sort of rest for awhile. When you eat gluten again it can go into overdrive and attack it more causing a worse reaction. Of course there are exceptions to everything and like I said before there are several folks on here that do not have reactions when they are exposed to gluten. This is where follow up testing can be helpful in determining if gluten is getting into your diet.

Also, after being gluten free for awhile, if symptoms don't improve, then it might be worth checking for gluten sneaking into your diet somewhere or explore other intolerences. It is estimated that about 10% of celiacs can not tolerate certified gluten free oats(avenin sensitive enteropathy) and react just as bad as if it were wheat, barley, or rye. It is generally accepted that it is recommended to wait to try gltuen free oats for about 6 months to 1 year. At that point start slow and note any problems. Plenty of people tolerate them fine. We avenin sensitive folk are in the minority. Other things likely to cause issues in the beginning are dairy, soy and corn. I wouldn't stress over any other food issues at first(unless you already have allergies or intolerences). Go gluten free and see how that goes. For me gluten and oats are the only issues I have as of right now. Thank goodness.