Neg Blood Tests - Please Help!

[Tarantula44]

Hi everyone, Since my doctor recently brought up celiac as a possibility for me, I have become familiar with the disease and the wealth of info you all provide. Thank you for that. Since researching it, I have realized celiac makes so much sense for me. I have the common malabsoprtion issues (iron, folic acid, calcium, zinc), digestion issues, food allergies, inflammation, interstitial cystitis, migraines, UTI's, ulcers, fatigue, anxiety/irritability, adrenal issues, etc. While I understand these symptoms and issues can stem from other things than celiac, it seems most likely for me.

I received my blood tests for IGA total, IGA & IGG Gliadin, and transglutaminase Ab IGA and they came back negative (IGA total is 325, Gliadins are 3, and Transglutaminase IGA is 1.2). I added gluten into my diet for two months before taking these tests. Here is the kicker, I feel like when I remove gluten from my diet for 2 months or longer I see an improvement in symptoms, but symptom improvement is NOT noticable after only a few days of elimination. Also, my cousin has been diagnosed with celiac and her brother was tested because he had symptoms (very similar to mine) but his blood tests came back negative like me...he eliminates gluten and feels much better but never had the biopsy. Are these tests pretty definitive? Are there other tests I can do that might provide more answers besides the biopsy? I have extreme hypoglycemia, and really don't want to do the biopsy becuase my system is so fragile right now, it will set me back so much with my health. I am frustrated and confused on what to do and my doctor is out of town for another week. Can anyone provide any insight? I would VERY much appreciate it. Thanks so much. ~t

[Takala]

In the end, how you respond to a gluten free diet is the way to tell whether or not you need to be eating gluten free.

The tests are not 100% accurate. You could have non celiac gluten intolerance. You can do over the counter genetic testing to see if you have the genes predisposing you to either celiac or nc gluten intolerance, which would indicate a higher probability that this is your problem.

I've never met a doctor in person who was able to put together that the constant UTI's and cystitis and kidney problems with crystals forming, was linked to how much calcium was being filtered out by the kidneys, (this is what happens when you're not absorbing minerals properly, and your body is attempting to regulate blood calcium levels any which-way, by robbing the bones) except for ONE UROLOGIST decades ago, who probably had no idea he was to be one of the "keys" to my figuring this gluten intolerance out years later. All I knew at the time was that I had to switch calcium supplements, not take Tums anymore, and take D and multivitamins.

I have subsequently told a LOT of doctors about the link between (my) gluten intolerance and UTIs and chronic cystitis/infections, which went away once I changed my diet to gluten-free, but I have no idea if it's sinking in.

[mushroom]

I have subsequently told a LOT of doctors about the link between (my) gluten intolerance and UTIs and chronic cystitis/infections, which went away once I changed my diet to gluten-free, but I have no idea if it's sinking in.

I do the same (only mine have not gone away). My current PCP believes me, particularly since it runs in the family, and the worst sufferer is my sister who refuses to believe that gluten is her problem. It seems like I am forever on cranberry tablets But other doctors -- pffft! Oh no, that isn't the reason, its ___________ ________ ______ fill in the blanks.

I remember having to take my mother (on vacation with me) to an ER in a hospital out in the boonies someplace in the desert because she was suffering from intolerable cystitis. Claimed we were driving too long and not stopping to drink enough, when we were just trying to get her out of the heat and were stopping for cups of tea in every town (when there was one ) And she might have had a point since I have to limit fluid intake because of bung kidneys and it's sometimes a fine line between hydration and dehyration When in doubt, drink a glass of water with a cranberry tablet.

[Tarantula44]

In the end, how you respond to a gluten free diet is the way to tell whether or not you need to be eating gluten free.

The tests are not 100% accurate. You could have non celiac gluten intolerance. You can do over the counter genetic testing to see if you have the genes predisposing you to either celiac or nc gluten intolerance, which would indicate a higher probability that this is your problem.

I've never met a doctor in person who was able to put together that the constant UTI's and cystitis and kidney problems with crystals forming, was linked to how much calcium was being filtered out by the kidneys, (this is what happens when you're not absorbing minerals properly, and your body is attempting to regulate blood calcium levels any which-way, by robbing the bones) except for ONE UROLOGIST decades ago, who probably had no idea he was to be one of the "keys" to my figuring this gluten intolerance out years later. All I knew at the time was that I had to switch calcium supplements, not take Tums anymore, and take D and multivitamins.

I have subsequently told a LOT of doctors about the link between (my) gluten intolerance and UTIs and chronic cystitis/infections, which went away once I changed my diet to gluten-free, but I have no idea if it's sinking in.

Thanks Takala. That helps to hear those symptoms went away being on the gluten free diet. I just desperately want to know I'm on the right track, but I guess the only real way to know is to follow the diet strictly for several months and see if symptoms clear...or not.

[Skylark]

With the slow 2-month decline it really does sound more like celiac than gluten intolerance. You may be one of the folks with celiac who doesn't get antibodies into your bloodstream. It's estimated the blood tests only pick up 75% of celiac disease becasue the antibodies are mostly in the gut, not the blood. You could try chasing down salivary anti-gliadin or using Enterolab but neither of those are considered diagnostic because they go the other way and have a lot of false positives. The only way to know for sure is the biopsy.

If you truly don't feel up to the procedure, your best bet is to go back to gluten-free and see whether your health improves. I'm sure eventually there will be a celiac test that doesn't require us to poison ourselves. Someone was just posting about mucosal challenge in another thread.

[AVR1962]

Sounds to me like you found your answer. I did not have a blood test while on gluten, my first doc actually tested me after I started my gluten-free diet (??), no longer my doc. Docs wanted me back on, I tried. I made it to day 12. And yes, it was a set back, I got very sick like you have mentioned. I knew I could not get the diagnosis at that point but decided whatevr this was I knew they gluten was at least part of my problem. They continued to test and eliminate. I finally saw a new doc who looked at all my tests, 7 months worth, and without a scope diagnosed me with celiac. He is focusing on that now and associating my symptoms to celiac ratehr than continuing to find some other reason for my issues.

You have to do what is best for you, bottom line, and if that diagnosis never comes, that's okay. Your health is what is most important.

Supplement and it will help put nutrients back into your body. I have malabsortion problems also. The vits have helped me alot!

[Tarantula44]

Thanks all of you. This helps a lot, and in doing more reading on the forum I've realized lots of people have had neg blood tests. I am actually getting the salivary gliadin test in a week or so.