Results Negative, Family History, And Symptoms

[Claire]

I'm going through the same thing right now. Through EnteroLabs my results were positive for the gene, positive for the antibodies and positive for casein sensitivity. To verify, I went to my doc last week and got the blood panel done. The results were negative. I told the doc I'd been gluten free for almost 5 months with only a slip up here and there but he said it didn't matter. What I can't figure out is when I did screw up I felt terrible about 2 days later and after a week I finally felt 100% again. From reading on this board, that seems to be the way it goes with most of you. Even the smallest bit of gluten (like getting Communion) now gives me palpitations and a headache. I though it might be psychosomatic but I wasn't expecting it. I think I might try going back on gluten starting in January and then have the blood tests redone in March. I just don't want to risk having a horrible holiday season. I know most of you may say "Why bother?" but for me I need to have a positive so I know I'm not going nuts. Up until about 5 months ago I had no idea what Celiac was but after reading Dangerous Grains and the posts on this board I'm almost 100% positive it's what is at the root of my problems. Frustrating to say the least.

Joe

Your doctor is absolutely wrong. After 5 months gluten free you couldn't possibly get a positive reading on the blood work. I had a doctor make that same mistake. I sugest you do some research on the subject - either here on the forum or online. There is plenty of information.

It would not be wise to go back on gluten just to get a test. If gluten is toxic to your body, why would you poison yourself just to confirm it. Don't you believe the Enterolab results? Why do you think a blood is necessary when their reliability is somewhat questionable?

You say you need to have a positive. Didn't Enterolab give you that? If you are positive for the gene and you have the symptoms - what else is really necessary?

Perhaps you just do not realize the damage gluten can do to your body. To have accurate blood work you would need to reintroduce gluten for several months. During those months cells in your body are being attacked. Of course, the choice is yours'. Claire

[jojoe72]

You're right Claire. I wasn't totally convinced by Enterolabs just because it wasn't "mainstream". I'm still new to understanding the disease and if I got "official" diagnosis I could get some local support and guidence. It's totally frustrating because I've been having digestive issues ever since I was a kid and no one ever mentioned Celiac. I've literally spent thousands of dollars on Doc's and tests that all came back negative. The only things that ever came back positive were vitamin/mineral deficiencies, no growth of beneficial bacteria, and the Enterolabs results. I must be the clinically healthiest person alive but still feel miserable after eating or drinking certain foods.

Thanks for your input,

Joe

Your doctor is absolutely wrong. After 5 months gluten free you couldn't possibly get a positive reading on the blood work. I had a doctor make that same mistake. I sugest you do some research on the subject - either here on the forum or online. There is plenty of information.

It would not be wise to go back on gluten just to get a test. If gluten is toxic to your body, why would you poison yourself just to confirm it. Don't you believe the Enterolab results? Why do you think a blood is necessary when their reliability is somewhat questionable?

You say you need to have a positive. Didn't Enterolab give you that? If you are positive for the gene and you have the symptoms - what else is really necessary?

Perhaps you just do not realize the damage gluten can do to your body. To have accurate blood work you would need to reintroduce gluten for several months. During those months cells in your body are being attacked. Of course, the choice is yours'. Claire

[nettiebeads]

The only things that ever came back positive were vitamin/mineral deficiencies, no growth of beneficial bacteria, and the Enterolabs results. I must be the clinically healthiest person alive but still feel miserable

Didn't anyone ever question WHY you were deficient in vitamins and minerals? That would be a big clue that something wasn't functioning right. Your body is telling you NO to gluten. Simple as that. Start the gluten-free diet now and start getting healed and healthy. Believe me, you won't miss the gluten; you'll consider it a minor trade off for being healthy.

[Rachel--24]

The results were negative. I told the doc I'd been gluten free for almost 5 months with only a slip up here and there but he said it didn't matter.

I just don't even know what to say to that.

Ummm...maybe instead of repoisoning yourself with gluten you should get a better doctor. I had my bloodtests 2 weeks after starting the diet and my biopsy 6 months after starting the diet. Neither were positive...I wasnt eating gluten. My GI doctor, who did the biopsy, was aware that I had been off gluten for that long. We both knew there wouldnt likely be damage. He never ONCE suggested I dont have celiac or gluten intolerance based on that. He said the best test is the diet and I clearly responded to it. For 3 years I was at the doctors at least once a week...taking tests...looking for answers. Since I went gluten-free I've only been back there once...for my biopsy.

If you are getting such obvious reactions from gluten consumption why would you want to put yourself through months of misery and pain...not to mention the damage you are causing to your body? I could see if you werent getting results from the diet but if you are you should just *know* that you're doing the right thing. Enterolab may not be "mainstream" but that doesnt mean the results arent accurate...especially when you have your own body TELLING you the results were accurate. You should just believe in the fact that gluten is harming you...you have the positive antibodies...you have a celiac gene...you have your body telling you...NO GLUTEN. What will be different if you put yourself through hell for 3 months and then test positive with a bloodtest? You will have the same answer you already have but you will be behind in regaining your health. There is also the fact that the bloodtests arent 100% reliable as many people here will tell you so its still not a guaranteed answer.

[jojoe72]

Ok...you all make it sound so obvious but up until last week I was feeling absolutely on top of the world. I was on the gluten-free diet and it literally was the best I've felt in years. But for some mysterious reason I felt horrible again and couldn't find any source of gluten. Before this happened I was 110% convinced that this was caused by gluten. Is it possible to have a relapse without ingesting gluten? The only thing new to my diet was a qt. of Rice Dream ice cream (after I ate it I read on here it has traces of gluten but I wouldn't think that would throw me that bad). The only other things I could possibly think of would be excess sugars and butter from Thanksgiving dinner...the rest of the meal was completely gluten-free. Either way, I really appreciate the input....I guess it's just not worth getting sick over just to get test results.

Thanks

Joe

I just don't even know what to say to that.

Ummm...maybe instead of repoisoning yourself with gluten you should get a better doctor. I had my bloodtests 2 weeks after starting the diet and my biopsy 6 months after starting the diet. Neither were positive...I wasnt eating gluten. My GI doctor, who did the biopsy, was aware that I had been off gluten for that long. We both knew there wouldnt likely be damage. He never ONCE suggested I dont have celiac or gluten intolerance based on that. He said the best test is the diet and I clearly responded to it. For 3 years I was at the doctors at least once a week...taking tests...looking for answers. Since I went gluten-free I've only been back there once...for my biopsy.

If you are getting such obvious reactions from gluten consumption why would you want to put yourself through months of misery and pain...not to mention the damage you are causing to your body? I could see if you werent getting results from the diet but if you are you should just *know* that you're doing the right thing. Enterolab may not be "mainstream" but that doesnt mean the results arent accurate...especially when you have your own body TELLING you the results were accurate. You should just believe in the fact that gluten is harming you...you have the positive antibodies...you have a celiac gene...you have your body telling you...NO GLUTEN. What will be different if you put yourself through hell for 3 months and then test positive with a bloodtest? You will have the same answer you already have but you will be behind in regaining your health. There is also the fact that the bloodtests arent 100% reliable as many people here will tell you so its still not a guaranteed answer.

[Claire]

Ok...you all make it sound so obvious but up until last week I was feeling absolutely on top of the world. I was on the gluten-free diet and it literally was the best I've felt in years. But for some mysterious reason I felt horrible again and couldn't find any source of gluten. Before this happened I was 110% convinced that this was caused by gluten. Is it possible to have a relapse without ingesting gluten? The only thing new to my diet was a qt. of Rice Dream ice cream (after I ate it I read on here it has traces of gluten but I wouldn't think that would throw me that bad). The only other things I could possibly think of would be excess sugars and butter from Thanksgiving dinner...the rest of the meal was completely gluten-free. Either way, I really appreciate the input....I guess it's just not worth getting sick over just to get test results.

Thanks

Joe

I am reposting this piece that alerts to this possibility for continued symptoms:

High Prevalence of Small Intestinal Bacterial Overgrowth in Celiac Patients with Persistence of Gastrointestinal Symptoms after Gluten Withdrawal.

OBJECTIVE: Celiac disease is a gluten-sensitive enteropathy with a broad spectrum of clinical manifestation, and most celiac patients respond to a gluten-free diet (GFD). However, in some rare cases celiacs continue to experience GI symptoms after GFD, despite optimal adherence to diet. The aim of our study was to evaluate the causes of persistence of GI symptoms in a series of consecutive celiac patients fully compliant to GFD. METHODS: We studied 15 celiac patients (five men, 10 women, mean age 36.5 yr, range 24-59 yr) who continued to experience GI symptoms after at least 6-8 months of GFD (even if of less severity). Antigliadin antibody (AGA) test, antiendomysial antibody (EMA) test, and sorbitol H2-breath test (H2-BT), as well as esophagogastroduodenoscopy (EGD) with histological evaluation, were performed before starting GFD. Bioptic samples were obtained from the second duodenal portion during EGD, and histopathology was expressed according to the Marsh classification. To investigate the causes of persistence of GI symptoms in these patients, we performed AGA and EMA tests, stool examination, EGD with histological examination of small bowel mucosa, and sorbitol-, lactose-, and lactulose H2-breath tests. RESULTS: Histology improved in all patients after 6-8 months of GFD; therefore, refractory celiac disease could be excluded. One patient with Marsh II lesions was fully compliant to his diet but had mistakenly taken an antibiotic containing gluten. Two patients showed lactose malabsorption, one patient showed Giardia lamblia and one patient Ascaris lumbricoides infestation, and 10 patients showed small intestinal bacterial overgrowth (SIBO) by lactulose H2-BT. We prescribed a diet without milk or fresh milk-derived foods to the patient with lactose malabsorption; we treated the patients with parasite infestation with mebendazole 500 mg/day for 3 days for 2 consecutive wk; and we treated the patients with SIBO with rifaximin 800 mg/day for 1 wk. The patients were re-evaluated 1 month after the end of drug treatment (or after starting lactose-free diet); at this visit all patients were symptom-free. CONCLUSIONS: This study showed that SIBO affects most celiacs with persistence of GI symptoms after gluten withdrawal.

Another subject: Blood testing for other reactive foods can be helpful but is far from foolproof. It tends to error on the side of false positives. It does usually identify the real culprits but it is hard to sort them out if it gives you too many that are not valid. In my case there were foods that I already knew were a problem, some that I didn't know about that were genuinely problematic. There were also about 10 that I had doubts about. Those are the ones you subject ot a personal elimination test. Take each one away for a week or two - then reintroduce. If there are no symptoms - keep that food in your diet and go on to test the next 'suspicious' one. Claire