It's good that you got tested for Celiac Disease! However, even though your tests for CD were negative, it's still possible that your reflux is coming from gluten. While your blood work was negative,
up to 20% of diagnosed Celiacs have positive villi damage, but have negative blood work
. Recent studies indicate that the tissue transglutaminase antibody (tTG) test may only be positive in 40% of true Celiacs when mild degrees of intestine damage are present on biopsy.
I suffered with reflux for several years. Finally after loving encouragement [nagging ] from my wife, I went to the doc to get it checked out. This started a 1.5 year long journey that changed my life. I did the GERD diet, didn't really help. I had the blood work and intestinal biopsies done for Celiac- all were negative for CD. My Gastro said there was nothing but chronic inflammation and I should stay on my reflux meds. I went thru about 4 different reflux meds [for awhile I was on two at once]. For awhile they'd help - but then symptoms would return.
Not only did I have reflux, but I had other gastro and neurological issues. After doing much research on my own [after getting no where with my doctors], I decided to try the gluten free diet. Low and behold... all of my reflux disappeared, all of my other gastro issues disappeared, many of my neuro issues disappeared.
So...if you continue have problems after jumping thru all the diagnostic hoops and following the GERD diet...consider giving the GF diet a serious try. What have you got to loose...besides your reflux.
Thanks for your comments and insight....you and I both know the probability of gluten being a factor in Amy's case is high considering the autoimmune predisposition, but sometimes it might really be nothing more than a case of bad reflux. If the reflux doesn't resolve with avoidance of spicy foods and proton pump inhibitors Amy will more than likely be back with an update about her unresolved reflux and returning PMS/PMDD....We can only do so much to advise or caution even with all the red flags. It's up to Amy whether or not she's ready to give gluten free a chance. I can't tell you how often I suspect gluten intolerance yet the denial is strong, even with a positive fecal or blood.
I have been doing so good! And last month ended up getting my first cold sore (huge cold sore lip swelled up huge and I still have a scar) followed by a weird headache (headache day 17 ish) it was shooting into my face with parts of my face feeling numb and really weird. I was dead tired and completely spacey just wanted to lay in bed and sleep or just stare into space. Doc said either shingles (wasn't) or trigeminal neuragalia put me on prednisone and anti viral. Now again on day 17 ish went to the movie and got a "headache" again this time no shooting paid don't know how to explain it it felt weird. Even a couple of days b4 that I was sensitive to noise and my clothes all bothered me just sensitive to everything. Very fuzzy tired weird feeling in my temple and face no shooting pair or numbness this time but crazy tired and out of it again. before that like day 13 or so got bad uterin cramp reminded me of contractions i had with kids, stopped me in my tracks more than once lasted about 30 min or so. So that was sunday it started. Woke up today (day 20) and went for walk felt great! Almost on a high was weird more energy then remember having in a long time almost felt kinda drunk (LOL) very clear headed then all of a sudden got dizzy for a minute or two and it all started again back to fuzzy cranky head feeling weird. Doc is talking about a catscan or says it may be hormonal. What are your thoughts?
I am sooo sick of this. I have been doing this for years and I have a good idea of what affects me and what doesn't I know how I feel when I push it and get off of diet a bit to much. I have never felt like this B4. It makes the most sence that it's hormonal with my past problems but this is all new. Why would that be!? I am completely frustrated and just want to be albe to hold a thought and not feel like a scatterbrain all of the time. Been saying the wrong thing, asking same question over and over. Sorry just frustrated, and to honest pretty darn cranky! LOL
Any thoughts you may have would be appreciated!
Sounds like you added gluten or dairy or both back into your diet. I'll have to go back and re-read what your specific problem is. But if I had to guess it's gluten. The cold sore, foggy brain, and other symptoms would be indication of gluten.
The only thing you can do is check everything you're eating again and make sure it doesn't contain any gluten. Have you ever been tested for Celiac?
I was tested for celiac and it was fine. So I have never cut out gluten. After testing things in the past I never felt I was that sensitive to dairy. I drink soy milk but will occasionally have reg. cheese. But I have been doing that for years. That's what is so weird I haven't really changed anything.
Amy, you could be what's called non-celiac gluten sensitive. That seems to be what I'm finding in many of my clients who test negative for Celiac. You could still be having an immune response to gluten or dairy (or both). People with a predisposition to autoimmune disease often have what is called a permeable gut, which allows for proteins that are not supposed to get into the blood stream...into the blood stream. Once they make it into the blood stream these "undigested proteins" create an autoimmune casscade of events.
One of the ways to know if you are sensitive to gluten and dairy is to order the stool test through
or try the gluten=free diet and see if you resolve your symptoms. Please go back and re-read this message you posted back in October...the message from Al, who also tested negative for celiac I think explains it very well.
Good luck and let me know if you have any questions regarding Enterolabs or the Cycle Diet on the main message board...Thanks Amy,
I don't know why i didn't listen sooner. I have been trying out a gluten free diet and feel much better. It has been hard I loved my kashi as you know and probably relied to much on grains in my diet but it is fast and easy (toast, cereal, granola bars).
I have still been in contact with my doc about the headaches,haven't had one since i started cutting out gluten although it's only been a couple of weeks, the last 2 months it's been around the 27-28th that I have gotten it and been out of it so we'll see what happens the next couple of days. My doc says that gluten wouldn't cause that and they are 2 seperate issues, he mentioned going to a specialist for digestive prob and having a cat scan for the headaches. Do you think all of that is necessary or will i be ok to cut out gluten and watch dairy as well and wait and see.
Are there any other supplements I should be taking if I can cutting out gluten?
Thank you sooo much I wish Doc's would take this more seriously it's extremely frustrating and I think of how many woman are suffering needlessly. I am so glad i found you and the cycle diet!
Thanks again, Amy
I so sorry, I don't give GF/DF diet/supplement advice to workbook holders through Private messages...Please order a private consultation
via RD Services
link and I would be very happy to help you with that. I have no idea what medications you are on or current abnormal lab tests. It sounds to me like you may have some other autoimmune issues immerging during the luteal phase. And the GF diet prescription has a bit of a steep learning curve. You should also really be tested for gluten-sensitivity and as I have Urged you to do via EnteroLab.com so you know for certain that it's gluten and/or dairy causing you problems.
If you don't test you will always wonder...is it the gluten, dairy or something else. One of the main symptoms of gluten intolerance/sensitivity are headaches. However, like your doctor said, it could also be something else. It's interesting that you've excluded gluten for 2 weeks without having a headache. There's a good sign for you.