arkoflove

Hi there,

2 years ago my PCP diagnosed me with Celiac due to my blood test results being 'equivical' and having a good response to going off gluten. At the time I was not 100% gluten free, but was on a low carb, thus lower gluten diet. I couldn't help but wonder at the time if my tests would have been a definitive positive if I had been consuming more gluten.

I went off hgluten for a time, and when I began to feel better I ate it agin because I kept being told that blood tests aren't the gold standard and I would need an edoscopy, and I must not have it.

I was fine for a time, for 3 months plus an entire pregnancy. After that my issues started up again.

This month I went to see a GI, looking for possible IBD. No IBD was found with both a colonoscopy and MRI. A celiac blood draw was done for TTG. My value was 3. Under 5 was considered negative, 5-8 equivocal, and 8+ positive. I had been gluten free for 6 months. My doc and I discussed the need to be on gluten before the test, but we decided to run it anyway. I can't help but wonder why I am even producing TTG 6 months after stopping gluten, and if it actually indicates that it would have been positive 6 months ago?

It's hard not having a definate answer. What do you think?

-Megan

I just wanted to let you all know something that I am really happy about-

My Naturopath has me taking 3 capsules of Oregano 2x a day to treat Candidia. It is working wonderfully for me. She said to maintain my low carb diet with lots of veggies and some fruit during this treatment. She said it's important to have enough sugars/carbs to keep the Candidia active so it can be killed off.

I wanted to pass this on to you all as a thought. I had searched it out online before going to this lady, and it was the reccomended remedy from a naturopathic approach. Studies showed it as effective, if not more so, than perscription anti-fungals.

Just thought I'd pass on my info, and what is working for me!

Blessings,

Megan

Thank you!!! I'm so excited to try them!

Anyone know of any out there, at all??

So soy is definately a problem for me, I cut it out for a short amount of time, or at least significantly reduced my intake. Yesterday I took a bite of a soy protein bar, and right away my throat and nose started itching and I started to sneeze. This morning I put some in my tea, and I had the same response! It cleared up after a little while. So that would indicate an allergy, right? Would this have an impact on my digestive sysetm also?

ravenwoodglass- thanks for your reply. I believe that everything in my diet has been gluten free (save my cc's with what I believe were chocoate chips and mrs butterworths sf syrup) The nuts and tea are gluten free.

The stevia definately was gluten free.

txplowgirl- definately cutting out the nuts! OY. So sad though, I love them. I may do an elimination diet after my Dr. appt, I want them to be able to have accurate test results if they do bloodwork. I really appreciate your info on this!

grainfree- yes, only a few more days! The waiting stinks!

Thank you everyone for your replies. Talking on here is helping me get through everything. It's a difficult journey.

Could using large amounts of stevia be my issue?

Hi Megan,

You sound to me like you have other food intolerances. Main ones are soy, nuts, eggs, etc. Also, you may not think so but you might also be having cross contamination issues also. Do you share a gluten kitchen or gluten free? Have you replaced your teflon pans, cutting boards and any wooden utensils? Have you checked your shampoo, lotions and makeup?

Hang in there.

I don't have any teflon pans...changed my makeup, don't share cutting boards. Really have just been eating eggs cooked in a stainless steel pan, and costco rotisserie chicken...I got cc'd with milk in a latte last week, and ate choc chips that threw me for a loop, and am only now starting to use the restroom slightly normally now. After eating the nuts my stomach is churning.

I don't really know where to go with my diet now...should I cut out soy, eggs, and (obviously) nuts? I really feel at a loss as to what to eat if I do that.

Could stevia cause issues too? I use that in my tea and coffee. Decided to put it away for now after how terrible I feel today.

Thanks for your reply!

I have been gluten free (save cc incidents) for a good 6+ weeks now. I started to get way better, and then went downhill again. I have an appt with a GI on Monday to really get into all of this. I went gluten free after positive Anti-Gliadin tests (both IGA and IGG). My other tests on the celiac panel were negative tho.

I have cut out milk from my diet, as it seems I have lactose intolerance (discovered after going gluten-free). I still end up feeling really aweful in the evenings...I have been bloating up, struggling with consitpation and thin stools...Almonds and macadamia nust give me the big D...

How do you know if you are Casien sensitive and in what foods do I find that?

I have been eating a lot of chicken, eggs, soymilk, tea, decaf coffee, and soy/whey protein shakes. I am wondering if it is the caffine giving me the shakes and fatigue as the day wears on?

I tend to feel SO tired so much of the time. My arms feel heavy. It feels like such effort to move sometimes. A few months ago I was struggling with GI issues before going gluten free, but I had energy, and I was excercising and in great shape.

I feel like my body is giving out on me. I am getting very afraid- what if I have cancer? Why am I so messed up after I had begun to improve?

I try to stick to a very basic diet, but then I give in to cravings (chocolate, almonds, ect) and feel even worse.

What should I address with the dr on Monday? I wish they were doing the endoscopy immediately, waiting is making this even harder for me.

I feel like this is SO ridiculous, no one in my family has any food allergies or intolerances, and all this has shown up gradually over the past 2 years for me.

Thanks in advance,

Megan

What was it that you ate that you reacted to?

I ate oatmeal cookies made with gluten free baking mix and Bobs Certified gluten-free Oatmeal. That night I also that Bobs gluten-free Cornbread, and the next day Bobs gluten-free Brownie mix. I am wondering if it was the oatmeal and then the gluten-free mix were just carbs that 'sat' on top of it all? When I get glutened I get C and bloating and gas....Nothing moves for days. I also thought maybe some sort of flour in the Bobs gluten-free mixes?

Since I was so high in the Gliadins, would that make me sensitive to the protien in Oatmeal?

Went to the Dr for bloating, alternating constipation/D issues. She ran a Celiac Panel of these tests, and here is exactly what the results look like. On the Gliadin tests is my result the number next to the word "Index"? (1.11 and 1.19) The [H] meaning "High"??

Just feeling frustrated overall. My body was doing great for 1.5 weeks, then I ate something (all certified gluten free) and its taken me 1.5 weeks to come down off it...Can the Gliadin indicate a intolerance to something else? Or should I be concerned about looking into something else? Didn't do an Endo due to Drs views on seeing a response on diet. Now thinking maybe I should, but have been gluten free for almost a month.

Thoughts are much appreciated! Thanks! -Megan

TRANSGLUT IGA <4.0 U/mL <4.0

Referecne range for Transglutaminase IgA Abs:

Negative.....<4.0 U/mL

Weak Positive......4.o-10 u/mL

Positive............>10.0 u/mL

RETICULIN IGA <1:10 Titer <1:10

ENDOMYSIAL IGA <1:10 Titer <1:10

GLIADIN IGA [H] 1.19 Index

Reference Range for Gliadin IgA: <0.91

<or= 0.90...............Negative

0.91 - 1.09..............Equivical

> or = 1.10.............Positive

GLIADIN IGG [H] 1.11 Index <0.91

<or= 0.90...............Negative

0.91 - 1.09..............Equivical

> or = 1.10.............Positive

IGA TOTAL 209.0 mg/dL 40.0-350.0

you may be one of the 10% of celiacs who reacts to oats? (assuming you used certified gluten free oats in the cookies, not something like quaker, in which case, I'd bet money on contaminated oats)

They were certified, but Bobs red mill. I'm wondering if its oats and corn? Does diet soda have corn by products in it?

Hi Megan,

So frustrating I know. I have heard that Bobs RedMill DOES have alot of CC issues. To be honest the only releif I got was by going on the SCDiet. I know its super restrictive and hard so maybe not everyone can do it. I had to go back to basics for A LONG TIME before I found a steady baseline. My symptoms were exactly like yours Id gain like 10 pounds over night and get serious constipation (im glad im not alone...thought I was). The biggest things for me have been: no resturant eating (EVER), no grains, no sugar, no soy. If you dont want to go on the SCD I would at least make the switch to almond flour and not use the rice, potato flour-- it would also help with the blood sugar and I didnt put on any weight from the added nut caloriess (actually the opposite, Ive lost 5). Take care of yourself an be patient.

Wow, thanks for your reply! I tried to message you but it wouldn't work. How long did it take you to come down from your symptoms? Any advice for what to use to relieve constipation? It is so frustrating to gain weight overnight like that...

Hubby and I are going to stay in downtown Bellevue in a little while for our anniversary. I'm feeling kindof down AND paranoid about eating out during our stay. So far my eating out experiences have been dissapointing (getting glutened) since my diagnosis. Its dissapointing since we always have loved to eat out together. The last thing I want is to get glutened or cc'd on my anniversary!

Please pass on any great places in the Bellevue area (or any to definately stay away from!)

Thank you!

Megan

Well, I've posted about chocolate chips on here and about Mexican food. =) Here I am with yet another question...

I got glutened (I'm assuming, unless I have another food intolerance to ferret out, working on that too...) with Mexican food about a week and a half after going off gluten. I recovered in about 2.5-3 days. This weekend I was either glutened with cc or suffering from another food intolerance. I ate (over a period of 3 days) gluten-free oatmeal cookies, gluten-free Bobs Red Mill Cornbread, and gluten-free Bobs Red Mill Chocolate brownies. (I was so happy to have gluten-free baked goods again, lol. Next time I approch things one item at a time.)

I ended up with C, bloated prego belly (really bad), and I think some fatigue. I am still 'coming down' off my reaction to whatever it was. I am still waking up with a bloated belly, and having bathroom c issues. When glutened I immediately go up in weight, and this time in 3 days I was 10lbs heavier. I've lost 5 of the 'glutened' lbs, and have 5 to go. I know that it's not fat, but must be water retention and c...It's all in my belly. I'm so frustrated with this situation!

I wash my hands before touching my food or putting anything in my mouth or doing any gluten-free baking. My pans and dishes that I used were all glass and had been washed. My counters were clean when I baked.

Respones here (on my other questions) have led me to believe that Bobs Red Mill can be cc'd often? Is this generally ture?

Also, is it worse every time you are glutened?? And does it take longer to clear up each time? I know that you all have said you react to smaller and smaller amounts of gluten.

I feel nervous now to try to eat anything new. I am back on my diet of very basic foods. I handle canned beans, protein shakes, meat, veggies, almond butter coffee, and tea well. Also have milk in my tea and coffee. And have eaten small amounts of fruit. I admit to throwing in Diet Coke with Splenda, cause sometimes you can only take so much! A common ingredient in my gluten-free mixes I ate each of my 'reaction' days was cornmeal in the bobs mixes. Also chocolate chips, but nowhere on the bag does it say there are any wheat ingredients. So now I am waiting to completely clear up my last glutnening (which is taking a week at least- way longer than the other times) and going to have to try some corn.

If it IS cc from Bobs Red Mill, where do I get flour from and how do I find trustworthy sources? I'm going to just try almond flour for baking after finding the Gluten Free Almond Flour cookbook. Seems easier, and I am facing a blood sugar issue.

All advice and thoughts are appreciated! Thank you for all your responses on my other topics. I know I am echoing some of the same in this post, and appreciate your patience.

-Megan

Thanks for your reply! I actually was looking at the almond flour because of Elana's cookbook and blog. So you would trust the Lucy's Kitchen flour? I was looking at the Honeyville, seems like a good price. But the last thing I want to do is spend $$ on something cc'd.

Is is super high in calories when you bake with it?

Call the 800# on the package, and see what the company says. There are chocolate chips that are gluten free, google it.

Some cornmeal is not gluten free...you should watch the package and check for the words "gluten free" and then it still may be CC'd.

The Cornmeal was a gluten-free bob's mix...I'll have to google gluten-free chocolate chips. Thanks! Don't they have to list all ingredients tho?

I got a cookbook from the library on baking gluten-free with almond flour. The author only seems to add one other flour occasionally to her baked goods.

It seems so much simpler, and sounds like a nice idea. It also lowers the GI factor of the foods, causing less of a blood sugar issue. I have found out that not only am I Celiac, but I have reactive hypoglycemia, and have to severly limit simple carbs and sugars. Almond flour sounds like a way to maybe squeeze around this?

How do you all feel about almond flour?

-Megan

I'm still trying to figure out if I got cc glutened this weekend, or if I have another food intolerance. You may have seen my post on bloating returning after eating gluten-free carbs...

One thing I had on each of the days with new foods- chocolate chips. Could those have been the culprit? If not, I'm looking at a possible issue with cornmeal, or cc issues with Bobs Red Mill chocolate brownie, and cornbread mixes.

Does anyone know if they can legally do something to keep choc chips from sticking without labeling it on the package?

I'm just reaching for anything here...Sorry if it sounds crazy!!

Thanks!

Megan

I have also had issues with Bob's Red Mill products. Before you go through the daunting prospect of checking for other intoelrance you may want to try some other brands. Gluten Free Pantry makes some good bread mixes and a great chocolate cake mix. Pamela's is also good if you can tolerate dairy.

So should I be concerned about the individual Bob's Red Mill gluten-free flours I purchased? Or just their mixes. I haven't opened the flours yet, so I could return them. I did open an Arrowhead Mill gluten-free cornmeal, but all my Bobs are sealed. Did you have a strong reaction with Bobs?

It could very well be CC. The pregnant tummy is my first sign of being glutened and I am very sensitive so it doesn't take much. Your reaction is just like what I might get. I do get the fatigue etc. but I wouldn't rule out gluten just because you didn't seem to get that yet. Sometimes I won't get that unless I eat that CC'd product everyday for a few days in a row, then I'll realize that I have been fatigued and I'll also get emotional really easily. Even if I get it just once, I'll sometimes not realize until a few days later that I have been fatigued. Did you use an old baking pan? Does it have seams in it? your old handheld mixer? Baking powder, baking soda, even spices like cinnamon or other ingredients lefover from pre-gluten-free days could be cross-contaminated and need to be replaced with new ones.

All the dishes I used were glass, and have been washed pretty well. I cleaned up the kitchen a bit ago, before I baked with the bob's mixes. I didn't use a mixer, but I am REALLY glad you mentioned that, because I definately need to get a new one and hadn't thought of that yet.

Is it common to notice CC issues with Bobs Red Mill products?

I guess I'm back on the simple diet for now. This is so daunting right now. I just feel so emotional about it all. I never dreamed I would have a food issue like this. I was doing great eating beans, protien shakes, meat, veggies, milk in my tea and coffee...so back to that scenario!

Should I go in for allergy testing?

Thank you for all the helpful advice and encouragement.

-Megan

Things were going great for me, but since I have started including more carbs in my diet, I am struggling with the massive bloating and some tummy issues again. I am so frustrated.

I don't feel "glutened" with the fatigue and mental fog that I get with gluten, but I am severly bloated and constipated.

Could I possibly have an issue with corn? I have made bobs cornbread (gluten-free) and gluten-free oatmeal cookies- bad night (at first I thought it was the gluten-free oatmeal I was sensitive to). Then I made bobs gluten-free brownies and both nights I've eaten them my tummy's expanded to look 6mo pregnant.

I did get glutened over a week ago...could I just be struggling to get 'normal' again?

I had been eating mainly protien shakes and canned beans, along with chicken or beef for dinner, and cesar salad (I really love beans, lol) for the first 3 weeks off gluten and was doing great- flat tummy and lost nearly 10 lbs! Now since eating more carbs (all gluten-free) I am up 9-15lbs. What is the deal? I feel completely crazy. I told myself yesterday it was back to the previous diet, but those brownies called my name. Sigh. Could it be the cornmeal in all those mixes? Should I have an allergy test done?

Thank you all again,

Megan

gluten-free for 3 weeks

Positive Anti-Gliadin tests...

Oh my goodness! Thank you so much for all your replies.

Things were going great for me, but since I have started including more carbs in my diet, I am struggling with the massive bloating and some tummy issues again. I am so frustrated.

When I am feeling better I'm going to go out for some rice and beans (lol) and really talk to the people at my local mex. restraunt. Hopefully we can figure it all out.

Could I possibly have an issue with corn? I have made bobs cornbread (gluten-free) and gluten-free oatmeal cookies- bad night. Then I made bobs gluten-free brownies and both nights I've eaten them my tummy's expanded to look 6mo pregnant.

I had been eating mainly protien shakes and canned beans, along with chicken or beef for dinner, and cesar salad (I really love beans, lol) for the first 3 weeks off gluten and was doing great- flat tummy and lost nearly 10 lbs! Now since eating more carbs (all gluten-free) I am up 9-15lbs. What is the deal? I feel completely crazy. I told myself yesterday it was back to the previous diet, but those brownies called my name. Sigh. Could it be the cornmeal in all those mixes? Should I have an allergy test done? I'll probably re-post this on its own...

Thank you all again,

Megan

gluten-free for 3 weeks

Positive Anti-Gliadin tests...

I ate Mexican last night, and got glutened. I feel so frustrated and dissapointed. We even talked to the staff to inquire about wheat ingredients. I was told that there was wheat in the shredded chicken, so I switched to ground beef. I got a tortilla salad minus the tortilla, so lettuce, refried beans, rice, ground beef...I did eat chips there, not sure if that was wise.

It was my first dining out experience with my husband and kids since going gluten free. Eating out used to be a favoritte pastime for us. Now, everything has changed.

I'm supposed to meet my dad for lunch on Thursday at a Mexican resteraunt, but now don't know what to order. It is hard for me still to figure out how to explain it to the staff, especially with a slight language barrier.

Can you all give me some tips on definate safe items to order? And specifics to look out for?

Thank you!!

-Megan

Curious if any of you know for sure?

Thanks!