Negative Celiac Panel-Positive Symptoms?

[Larrylyn]

Hi..I'm new here. Been diagnosed with severe IBS for 20 years. Chronic intestinal problems, gas, bloating, etc, Doc put me on donnatal for years. Tested for everything but Ciliacs. Finally diagnosed severe IBS and I've just had to live with it for years.

One daughter, age 40, has been showing same symptoms as my IBS and has visited 4 docs over the past year. One decided to do a ciliac panel........came back positive. Did a biopsy and it came back positive. Another daughters daughter, my granddaughter, has complained of stomach aches for years, she's 7. Because of the family ties she had a blood test and biopsy done. Both came back positive. I have a 36 yr old son who has the same symptoms. We all went gluten free for 5 weeks.................all symptoms disappeared or lessoned.

My kids decided I needed to be tested. I went back on gluten for 1 week.............thought I was going to die! Pain, gas, intestinal problems....worse than before I went off it! Made a docs appointment for the panel...........it came back negative! Doc wants me to go back on gluten for 3-4 weeks and then be retested.............If I was misdiagnosed for 20 years should I go back on it to be retested? He's also talking about a colonoscopy and biopsy after the retest..............with a high insurance deductible not something I want to do if not necessary. Any advice or opinions?

[mushroom]

Hi..I'm new here. Been diagnosed with severe IBS for 20 years. Chronic intestinal problems, gas, bloating, etc, Doc put me on donnatal for years. Tested for everything but Ciliacs. Finally diagnosed severe IBS and I've just had to live with it for years.

One daughter, age 40, has been showing same symptoms as my IBS and has visited 4 docs over the past year. One decided to do a ciliac panel........came back positive. Did a biopsy and it came back positive. Another daughters daughter, my granddaughter, has complained of stomach aches for years, she's 7. Because of the family ties she had a blood test and biopsy done. Both came back positive. I have a 36 yr old son who has the same symptoms. We all went gluten free for 5 weeks.................all symptoms disappeared or lessoned.

My kids decided I needed to be tested. I went back on gluten for 1 week.............thought I was going to die! Pain, gas, intestinal problems....worse than before I went off it! Made a docs appointment for the panel...........it came back negative! Doc wants me to go back on gluten for 3-4 weeks and then be retested.............If I was misdiagnosed for 20 years should I go back on it to be retested? He's also talking about a colonoscopy and biopsy after the retest..............with a high insurance deductible not something I want to do if not necessary. Any advice or opinions?

Your family history pretty much gives the answer. 60% of celiacs are first diagnosed with IBS before the docs wake up! And the average waiting time for diagnosis is 13 years (see post on here from Admin. today) with some waiting up to 20 years (raises hand, except I self-diagnosed )

Unless you want to spend a lot of money and put yourself though misery, I think you pretty much have your answer. More and more doctors are coming around to the idea that a positive response to the diet is diagnostic in itself, especially considering your familly genetic history. I would not bother with the blood testing, but if for some reason your symptoms do not totally resolve you may want to consider the endoscopy to make sure there is nothing else going on. Apart from that, I would eat gluten free, consider myself finally diagnosed, go forth and by happy and healthy. You may want to consider the fact that you have been malabsorbing nutrients for years and are probably deficient in Vitamins D, B12, folate, and minerals zinc, potassium, iron (very important), among others, and may have a low functioning thyroid. If your insurance would cover a blood test for these it would be well worth while doing. For me it was D, B12, folate and thyroid. You can take an OTC methylcobalamine sublingual B12, and a D3 supplement (cholecalciferol) and you need to take bunches of it to start with because it takes a while to refill your tank. You can't get into too much trouble with these supplements. (I took a prescription of 50,000 iu of D3 one a week for several months; not I take one only once a month.) Thyroid needs to be tested and monitored by a doctor, as does iron (ferritin).

Good luck on your road to good health.

[Skylark]

Mushroom has given you great advice. Don't feel like you need a "doctor's note" to eat gluten-free. If the challenge is making you sick it's not worth it, as you may provoke other autoimmune health problems doing it.

Tell your doctor exactly how sick you got, and that you're not willing to gluten challenge any further and can he please check your nutritional status as if you were celiac. If he's not helpful you may want to consider switching doctors.