Newly Gluten Free And Frusterated

[Anna Isabel]

Hello everyone!

I have been gluten free forabout a month now. Generally, I feel great for a week, and then for no apparent reason, I'll feel sick again the next week. It is so frusterating, because I am eating such healthy foods! Seriously this is all I eat: fruits and vegetables, tofu and tempeh, quinua, nuts, beans, and dark chocolate for dessert. I do have buckwheat cereal with milk for breakfast, I guess I should cut out the milk.

I guess it is normal to still be having bad weeks? It is so frusterating, and totally messes with me psychologically--makes me feel like I am failing somehow. I don't really get naseated, just have this generalized stomach discomfort/indigestion, and stay in this weird limbo state where I know that I need to eat, but have very little appetite. It's kind of like I need to burp but I can't? Does anyone else experience this?

Thanks:)

Annie

[Mango04]

Hi Annie,

You might want to consider eliminating the tofu (and actually all the soy - at least for the time being). It's my understanding that when soy is made into tofu, the molecular structure of the protein becomes very similiar to the molecular structure of gluten. Some people with gluten intolerance find that they also have problems with soy for this reason. Dairy can cause problems as well.

I also have problems with buckwheat.

Hope you feel better soon.

[CarlaB]

It gets frustrating sometimes. I've been in a fog bank for two weeks (I did get glutened Friday night, too) and have been wondering why. I finally remembered, I've been anemic all my adult life and my GI told me to stop taking iron because mine was on the high end of normal. I had been taking extra iron at the time because of my fatigue, which ended up being from celiac not anemia. Anyway, I've been completely off iron for 5 months now and just bought some today. I think it's low again judging by how I feel.

So, it's all a delicate balance. Some things bother some people even though they don't have gluten. Hang in there, overall you'll feel better even if you have a few setbacks along the way.

[AndreaB]

Annie,

I have to agree with Mango04. I am intolerant to gluten and soy. I tested positive to an allergy to milk but am not intolerant according to enterolab. I'm still hoping to be able to include some dairy products like butter and occassional cheese. Try cutting out both soy and milk and see if that makes a difference. Don't know if you would want to cut out both at the same time or one first then another a couple weeks later. I have read that soy can destroy the instestines just like gluten.

Hang in there.

[lightningfoot speakin words]

I just got diagnosed, too and it seams that happens to me, too! one thing I do that seams to help is excercise!! (abb workouts seam to make it worse though) I normally go and play catch or jog.

I HOPE IT HELPS!!

[Anna Isabel]

Thanks so much for your response. I have been in denial I think with the whole dairy thing! Do you know if your body reacts to lactose in the same way that it reacts to gluten if you are lactose intolerant? It seems like if you eat even a small amount of gluten, you could be sick for weeks, but maybe a small amount of lactose could pass through your system quickly/relatively unnoticed?

Thanks-I don't think I have ever been tested for anemia! What do you mean when you say that you are in a fog? I think I get that way too!

I just got diagnosed, too and it seams that happens to me, too! one thing I do that seams to help is excercise!! (abb workouts seam to make it worse though) I normally go and play catch or jog.

I HOPE IT HELPS!!

oh, I guess you have to quote to show who you are responding too--I know, sometimes I seriously lock myself in the bathroom and jog in place--how weird is that! I never know if I should eat, or not eat!

[Nancym]

There's two things in milk you can react to, Lactose and Casein. Unfortunately it appears I'm not good with the casein.

Soy messes me up hugely. I had some soy chips the other day and suffered a lot for 2 days afterwards. I'm trying to figure out if it is quanitity related, I did eat far too many of them.

[loraleena]

It is normal to have ups and downs. I still have them 10 months into this diet. I would watch out for soy and dairy. Are you a vegetarian?

[schuyler]

I was in a situation similar to yours just 6 weeks ago. I have since gone through allergy testing, which came back negative for everything (although my doc somehow misplaced my results when I asked to see them). So, I decided to eliminate soy and dairy (at the suggestion of the smart people on this board), and I saw/felt a huge improvement. I was recently able to see my test results (after many calls to the place that performed them), and I found out that I my tests showed that I have a soy intollerance, lactose (and possibly casien-they didn't test for this, but I eliminated it 6 weeks ago- I am going to add it back into my diet next week and see how I feel) intollerance, and tree nut intollerance (not allergy).

Soy gives me the same GI symptoms as gluten does (severe pain and bloating that lasts for a week or more). Dairy just causes some mild to moderate discomfort that lasts for a few hours. I know that everyone reacts different, but that's how it is for me.

[Anna Isabel]

It is normal to have ups and downs. I still have them 10 months into this diet. I would watch out for soy and dairy. Are you a vegetarian?

Yes, I am--I'm running out of things to eat here:(

[AndreaB]

How long have you been vegetarian. Are you totally against eating meat? Do you eat eggs? My family just left off the vegan diet as between us we are allergic to gluten, soy and some beans. Need to try a few others and see how that goes.

[Anna Isabel]

How long have you been vegetarian. Are you totally against eating meat? Do you eat eggs? My family just left off the vegan diet as between us we are allergic to gluten, soy and some beans. Need to try a few others and see how that goes.

Yes, I've been a vegetarian for 10 years--I probably gave gluten/dairy intolerance to myself by eating to much of it over the years! But I won't eat meat again. I could through some more eggs into the mix, but those always seem to make me sick! I have heard that you can't be egg intolerant though, so maybe I am reacting to the butter/milk that restaurants prepare eggs with. thanks:)

[aikiducky]

You can be intolerant to eggs too. You can pretty much be intolerant to anything as far as I know. Basically, if it makes you sick, don't eat it.

Pauliina

[Guest greengirl]

It could be cc in the buckwheat cereal that you're reacting to. Here's some info that I pulled from this site -

Open Original Shared Link

Milling can create serious contamination hazards. Mills are usually powdery places where bits and pieces of plants can hang around on surfaces or even in the air. However, non-gluten containing plants milled in facilities that grind only non-gluten containing plants should be quite safe -- which is why celiacs often ask about dedicated facilities.

When non-gluten containing plants are ground in facilities that also grind gluten-containing plants, usually the equipment is cleaned in between, but in these instances, contamination would be a reasonable celiac concern.

Contamination possibilities in the processing phase depend on a number of variables too numerous to summarize here. As it happens, investigating the possibilities of buckwheat contamination turns out to be relatively easy. It seems that only a few US companies deal with buckwheat. We surveyed five companies, four of which sell retail buckwheat products (see following) and asked about a few aspects of their operations. Of the four, three companies produce buckwheat product that sound promising for celiacs.

BOUCHARD FAMILY FARMS is a self-contained operation that currently deals only with buckwheat and potatoes. Their buckwheat is rotated only with potatoes and their mill is used only for buckwheat. Bouchard is known for Ployes mix, a kind of griddle bread that contains buckwheat and whole wheat flour. Alban Bouchard says the whole wheat flour comes completely packaged from suppliers, and never comes in contact with the buckwheat flour that they sell plain.

THE BIRKETT MILLS, a larger operation, does handle wheat, but Cliff Orr, who is also vice-president of Birkett, says their buckwheat is milled in a separate, self-contained mill, and the ground buckwheat is packaged immediately at the mill. Birkett sells the widest variety of buckwheat products that are highly likely to be gluten free, and Orr says satisfied celiacs are among Birkett’s best customers.

NEW HOPE MILL handles a variety of products, including buckwheat. They buy the buckwheat from various farmers, clean and grind it in a dedicated facility, then use the flour in several products. Of their buckwheat products, only the plain buckwheat flour, sold under the New Hope Mills label, could be considered safe for celiacs. The ground buckwheat flour goes directly into separate packaging at the mill.

ARROWHEAD MILLS buys buckwheat from The Birkett Mills, which send the flour in 50-pound bags. Arrowhead then process the flour on equipment that is not dedicated to non-gluten-containing products. According to a spokeswoman, the equipment is cleaned between runs and the first 40 to 50 pounds processed on the cleaned equipment and given to charity.

MINN-DAK GROWERS LTD., has the largest dedicated buckwheat milling facility in North America, which is why it’s included here. The company also processes sunflower seeds and mills mustard seeds; both are gluten free.

Minn-Dak supplies buckwheat ingredients to the US and international food ingredients industry. According to Edwardson, the buckwheat Minn-Dak exports to Japan is guaranteed to be 99.5 to 99.9 percent pure. Similarly, the Minn-Dak buckwheat flour available in this country is thoroughly cleaned, ground in a state-of-the-art mill dedicated solely to buckwheat and then immediately packaged.

Minn-Dak wholesales their essentially pure buckwheat flour to food processors, so you won’t see a Minn-Dak label on store shelves. It might require a few phone calls to determine whether a processor’s buckwheat comes from Minn-Dak. You would also need to ask the processor how they handle buckwheat flour once it reaches their facility.

You can contact these companies and decide for yourself whether you want to add buckwheat to your gluten-free diet. Here’s the information you will need:

Arrowhead Mills, POB 2059, Hereford, TX 79065. Or call 806-364-0730.

The Birkett Mills, POB 440, Penn Yan, NY 14527. Or call 315-536-3311

Bouchard Family Farms, RR2, Box 2690, West Kent, ME 800-239-3237

Minn-Dak Growers, Hwy 81 N, POB 13276, Grand Forks, ND 58208. Or call 701-746-7453 New York, NY

[eKatherine]

I buy the Bouchard white buckwheat flour, it's marvelous stuff.

[4getgluten]

Anna - I think it's normal to have ups and downs. For me it really was two steps forward, one step back. It took me a full year before I felt good 99% of the time. Try keeping a food journal. Like others have mentioned, you may be reacting to other foods. I found that I had to cut my soy and dairy way back. I can tolerate diary better now, but at first I couldn't tolerate it at all. As for soy, I found that I just have to be careful not to have it too often. Good Luck, it will get easier. And, give yourself time to heal. If gluten has damaged your body, it will take some time to recover.

[eleep]

I do react to lactose in a way that's similar to gluten -- it's less intense and doesn't last anywhere near as long, but I still get the same components of anxiety/fatigue/malaise and then D the next day. This was one of the things that actually made me go ahead and get the Enterolab testing because I wanted to know for sure whether this was a casein or a lactose thing.

I do find that digestive enzymes help me with the dairy.

[loraleena]

After 15 years as a vegetarian I went back to eating chicken, turkey and fish (free range and organic). It was difficult to be a veggie when I can't eat gluten, soy (due to thyroid issues) and nuts.

[AndreaB]

After 15 years as a vegetarian I went back to eating chicken, turkey and fish (free range and organic). It was difficult to be a veggie when I can't eat gluten, soy (due to thyroid issues) and nuts.

I hear you. We went back to eating chicken, turkey, beef and fish (free range, natural, organic). We are allergic to gluten, soy and some beans (pinto, kidney, navy). We still need to try black beans, garbanzos and lentils again.

[Anna Isabel]

It could be cc in the buckwheat cereal that you're reacting to. Here's some info that I pulled from this site -

Open Original Shared Link

Wow, thanks so much for all that info. I guess that's also why you're not supposed to eat oats, right?

[Anna Isabel]

(Sorry, I never reply/quote the right way!)