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oceangirl

Old-timers Help! Reacting Again!

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Hi All,

This is a particular plea to those of you who've been gluten-free for awhile. I am nearly a year gluten-free, one year and 4 months gluten-lite and have just had the WORST month all of a sudden. I am gluten intolerant double DQI, had positive bloodwork with negative biopsy after 4 months glutenfree, and soy, corn, gluten, legume and mostly dairy-free. I really haven't had any really new things to eat but suddenly the crampy pain and bloat and left hip pain are back with a vengeance and I feel hopeless. No new cosmetics. The only thing I think exacerbating some symptoms is I am definitely going through peri-menopause. I keep a detailed food log and can find no obvious culprit. I do eat rice in the form of Erewhon's Crispy Brown Rice and Tinkyada pasta. I eat raw cane sugar and no other sweets except a few enjoylife chips sometimes. The only recent introductions would be watermelon, more carrots than usual and whole nuts. ANY ideas as to what's going on would be so greatly appreciated, or if you've experienced something similar yourself. I'm starting to wonder if there's just some other thing wrong with me!

Thank you in advance!

lisa

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I thought of two things during your post. One, is to check with manufacturers of your normal foodstuffs (besides fruits n veggies) and see whether any ingredient have changed, that's always something to look out for. Someone may have even just started processing in a plant that also has wheat when they never did before. My other thought is that perhaps while you were being glutened you had a hormonal reaction, and now that you're having an 'honest' hormonal episode, the symptoms feel the same. I actually experienced a major increase in libido when I went gluten-free, even as compared to before I had 'stomach symptoms'. Go figure.


If you're going through hell, keep going. ~Winston Churchill

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I'm so sorry you're feeling bad!

Just a suggestion: Maybe you've developed a new food intolerance? I started reacting to soy after being gluten free for one month. Then after 3 months, I started reacting to nightshades. At six months, it was legumes. Each time, it seemed to happen overnight. I'm at 10 months now, I still have to avoid those foods, and I've identified several others that I have to rotate or I start reacting. I also still get mystery reactions occaisionally. If I start feeling awful, I go back to my safe foods for a couple of days until I feel better.

I hope whatever it is, you figure it out soon!


~Li

Celiac, dx Sep 2006

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Hi, sorry you are feeling so badly.

I thought the suggestion that a once safe product is no longer safe was a very good one and certainly the first one to check out.

My only thought was whether or not the nuts might be giving you a problem, they can be very high in mold.

I hope you feel better soon. :)


A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

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Hi, sorry you are feeling so badly.

I thought the suggestion that a once safe product is no longer safe was a very good one and certainly the first one to check out.

My only thought was whether or not the nuts might be giving you a problem, they can be very high in mold.

Thank you all very much. Yes, I will check ingredients again and am trying to find my "safe" foods now!

Thanks again,

lisa

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I realize that not many people have this, but I am tapioca intolerant. I was fine for two years of gluten-free and eating tapioca and then one day, instant and repetitive diarrhea. So, I tried tapioca many times to figure out/make sure that it was the culprit. At first I thought it was dairy, but it wasn't. It's sad because I can't have very many Kinnikinnick products now.


Tapioca intolerant

First cousin dx'd with Celiac Disease

Grandmother died of malnutrition b/c everything made her sick... sounds like celiac to me.

Gluten-free since June 2005

Dx with IBS February 2005

Blood tests both negative (or inconclusive?) for celiac (in 2002 and 2004)

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I realize that not many people have this, but I am tapioca intolerant. I was fine for two years of gluten-free and eating tapioca and then one day, instant and repetitive diarrhea. So, I tried tapioca many times to figure out/make sure that it was the culprit. At first I thought it was dairy, but it wasn't. It's sad because I can't have very many Kinnikinnick products now.

Felidae,

Thank you. I suspect I'm intolerant of tapioca as well and eat no processed foods other than the rice krispies (Erewhon) and an occassional Larabar. No baked goods for me- something in them causes a reaction. Last night was quite bad; I may end up calling my doctor. thank you for your thoughts.

lisa

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Felidae,

Thank you. I suspect I'm intolerant of tapioca as well and eat no processed foods other than the rice krispies (Erewhon) and an occassional Larabar. No baked goods for me- something in them causes a reaction. Last night was quite bad; I may end up calling my doctor. thank you for your thoughts.

lisa

Hey Lisa -

I'm gluten-free 9 months - but I wanted to tell you I have a lot of trouble with nuts - especially peanuts. I can handle a little bit, but I've noticed that if I eat them over several days (in any form) I get a very "gluten like" reaction.

Just my 2 cents.

Melissa


Melissa in Virginia

Age 35, married, 2 kids, 2 dogs.

No diagnosis. Gluten free since 10/2/06

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Hey Lisa -

I'm gluten-free 9 months - but I wanted to tell you I have a lot of trouble with nuts - especially peanuts. I can handle a little bit, but I've noticed that if I eat them over several days (in any form) I get a very "gluten like" reaction.

Just my 2 cents.

Melissa

Melissa,

Thank you! Yes, you know it is good to be reminded that sometimes you just can't have things often and I DO notice that with things like Larabars (nuts and dates or bananas...) or, I can have a small chunk of cheddar cheese two days in a row but at 3 I get a little IBSish. I distinguish the "IBS" because that feels wholly different than what gluten or soy does to me- especially the evil gluten. I have taken nuts out and since veggies and fruits can bother me when I'm reacting I've reduced them as well ,so I'm basically eating meats and fish, a few grapes, bananas, crispybrown rice and homemade rice milk right now. So far I feel MUCH better today, although the nights are when everything can get pretty awful. Thank you all for your time,

lisa

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Hi Lisa,

I really understand how frustrating this is. I've been gluten-free for 2 years, and always seem to get sick unless I stick to a very narrow list of my "safe" foods. Interesting--tapioca is a problem for me, too.

Anyway, the Erewhon cereal caught my eye. I called them recently to inquire about their hot rice cereal and was told it was not made on dedicated equipment. I just thought I'd pass that along--of course I have no idea about the crispy rice.. I've been sick for extended periods and always the cause is either an additional intolerance (more of a problem early on than now) or the cumulative effect of eating or using a product that had traces of gluten from CC.

Just within the last month, I used a sunscreen that contained wheat over a period of about 5 weeks. The ingredients looked fine, but when I was constantly just not feeling well, I connected the new face care I was using and called and found out that it had wheat-derived ingredients that were not clearly disclosed on the labeling. It's been over a week since I stopped using the products, and I'm just begining to feel better.

I know you said that you weren't using any new cosmetics, but the same thing would hold true with traces of gluten that were being eaten--albeit unknowingly.

I hope that you get it figured out soon--if I am stumped, I go back to a simple, whole diet and work back up from there.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Patti, I'm curious that you said at first it was another food intolerance. How long did that period last for you?


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Only potential issue I can add that hasn't been covered already is prescription drugs and OTC supplements. You might want to re-check them. I had my first ever case of DH after getting a supplement from GNC that wasn't gluten-free and it took them a few days to admit it.


Karen B.

diagnosed with Celiac Nov. 2003

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Patti, I'm curious that you said at first it was another food intolerance. How long did that period last for you?

Patti,

Thank you so much for posting! I appreciate your thoughts as I've been reading them for a year now- thank you! I am going to call Erewhon on Tuesday (day off) and ask about that. I seem to have difficulty with small amounts over time as well and, although I'm not happy for you or me, it is helpful to understand that others have a VERY limited selection of "safe" foods. Sometimes I wonder how the heck we're getting all the nutrients we need, but, for now, I can't worry about that. I do know the things I put in my mouth are the most whole, healthful things that my system can take- not much junk! Weirdly, I am wondering if Big Agriculture carrots have something done to them as I am suspicious of them, too. Organic carrots seem fine. I'm reaching. It is a little dream of mine to not have to "feel" my digestive tract all the time. Then I try to remember there are worse things!

Thank you!

lisa

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Karen,

Thank you, too! I take NO drugs or supplements of any kind- not a big fan in the first place and too scared in the second. Although I do suspect I might benefit from some "beefing up"! I do wear lipstick and will recheck with Lancome (although I just did) and look at my shampoo again. (Fructis or suave) I need a suntan lotion as I work outside in summer but haven't gotten to finding one besides Lubriderm which only seems to come in 15SPF. Tra la tra la...on goes the battle- hoping for a better night tonight.

Thank you everyone!

lisa

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Lisa,

I have been thinking about this for days. I am wondering about some things out side the Celiac box. Have you ventured there?

I do hope you find the answer soon. Misery is no fun.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Lisa,

I have been thinking about this for days. I am wondering about some things out side the Celiac box. Have you ventured there?

I do hope you find the answer soon. Misery is no fun.

Lisa,

Yes, I know, thank you. Last night I had that horrible deep left side pain and I guess I'd have to call it excruciating. So... I guess I'll call some doctor Tuesday. Did you have something in mind? I do have a fibroid tumor (right side) and my ovaries are checked twice yearly with transvaginal ultrasound so I don't know... Thank you for your concern; I guess I'm getting tired of this!

Take care!

lisa

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Patti, I'm curious that you said at first it was another food intolerance. How long did that period last for you?

I did well on the gluten-free diet (after the initial learning-curve ;) ) for about 5-6 months. At that time, a lot of my symptoms returned.

With the help of an allergist/immunologist, I did an elimination diet and figured out that I'm intolerant to soy, corn, legumes, coconut, tapioca, and dairy (which I already knew--I was dairy free a year before going gluten-free). I also am sensitive to grains in general, so I went off all of them for 6 months. I now can eat rice a couple times a week, but really try not to over do it, as it's really added more variety to my diet.


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Last night I had that horrible deep left side pain and I guess I'd have to call it excruciating. So... I guess I'll call some doctor Tuesday. Did you have something in mind? I do have a fibroid tumor (right side) and my ovaries are checked twice yearly with transvaginal ultrasound so I don't know... Thank you for your concern; I guess I'm getting tired of this!

Excruciating...have you discussed endometriosis with your doctor? It won't show up on an ultrasound (I had 3 tv ultrasounds and none of them picked up my stage 4 endo.).


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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one year and 4 months gluten-lite and have just had the WORST month all of a sudden.

I am a newby but i think this is your problem. if you are gluten intolerent you should stay Gluten-FREE, any amount of gluten will cause problems. Your body can respond to gluten much more after you have been gluten free for a while and go back. I know that I have become even more sensitive to it after only 4 months gluten free.

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Hi All,

This is a particular plea to those of you who've been gluten-free for awhile. I am nearly a year gluten-free, one year and 4 months gluten-lite and have just had the WORST month all of a sudden. I am gluten intolerant double DQI, had positive bloodwork with negative biopsy after 4 months glutenfree, and soy, corn, gluten, legume and mostly dairy-free. I really haven't had any really new things to eat but suddenly the crampy pain and bloat and left hip pain are back with a vengeance and I feel hopeless. No new cosmetics. The only thing I think exacerbating some symptoms is I am definitely going through peri-menopause. I keep a detailed food log and can find no obvious culprit. I do eat rice in the form of Erewhon's Crispy Brown Rice and Tinkyada pasta. I eat raw cane sugar and no other sweets except a few enjoylife chips sometimes. The only recent introductions would be watermelon, more carrots than usual and whole nuts. ANY ideas as to what's going on would be so greatly appreciated, or if you've experienced something similar yourself. I'm starting to wonder if there's just some other thing wrong with me!

Thank you in advance!

lisa

I am certainly no expert. And I could be way off base. But my thought, for what it is worth is you could have just increased your fiber so much your body is having a difficult time handeling it. I have had reactions very similar to what you are describing (minus the hip pain) when I increase my fiber to quickly.

Good Luck. I hope you feel better soon.

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Hi Lisa, I hate strict elimination diets and food diaries, but will do them if I'm at my wit's end. HOWEVER, I recently had an idea about how to achieve some of the same detective benefits with a little less work. It requires an upfront investment of a couple of hours, plus shopping.

Here's how it goes. You sit down and make yourself a weekly menu. You think of all the things you like to eat for breakfast, snacks, lunch, dinner, etc. and put them on a schedule. Then you follow the schedule for several weeks and write down only when symptoms appear.

If this seems too hard, then you might "build" your menu over a week by simply writing down your choices for a week, then repeating next week.

I am just starting this because of my kids' mystery tummy aches, and I know it will take several weeks to figure things out. But, in the meantime, I am comforted knowing that we are working on it.

On their menu, I tried to put space between certain foods. If I was going to repeat, say, bananas, I would put them 3 days apart instead of every day so that the symptoms would not appear every day and cause confusion.

This might work really well if it's just one particular thing that is x-contammed with gluten. If it's a new intolerance, you still might be able to figure it out.

Gluten affects my hormones, and hormone spikes also bring out my gluten-y reactions (worse around AF) - so they feed each other. I do have endometriosis with (historically) a lot of pelvic and groin pain, and I have noticed that these pains are changing on the gluten-free diet.

Good luck,

April

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Excruciating...have you discussed endometriosis with your doctor? It won't show up on an ultrasound (I had 3 tv ultrasounds and none of them picked up my stage 4 endo.).

That's was I was thinking also, Lisa. Patti has a good thought. Or, perhaps a serious ulser or perferation of some kind, letting those stomach acids go where they should not be.

I hope you get to see a doctor SOON. Hope you get some answers.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Guest Doll
I realize that not many people have this, but I am tapioca intolerant. I was fine for two years of gluten-free and eating tapioca and then one day, instant and repetitive diarrhea. So, I tried tapioca many times to figure out/make sure that it was the culprit. At first I thought it was dairy, but it wasn't. It's sad because I can't have very many Kinnikinnick products now.

Yay! Someone else who also reacts to Kinnikinnick products! When I posted on here awhile back, I was the only one! I can usually have a 1 bagel, but 2 or 3, and it's off to make friends with the bathroom.

I am not sure if it's tapioca, pea flour, or any other of the "odd" fillers they use.

One concern is that if I keep reacting to food proteins, there will be nothing left to eat and I will basically be just as malnourished and sick as I was pre-Celiac Dx. I am gluten free and casein free, and that is all I'm going with. If your body has a "leaky gut" and keeps letting in and reacting to food proteins, what can you do? If you cut 8 things out of your diet, you'll react to the next 20....

It's hard to know exactly WHAT you are reacting to.

However, I find I feel best when I eat mostly salad and fruit, so that's what I eat the most of.

P.S. You may be cutting out all of these foods for nothing (aside from gluten), if your symptoms are caused by another treatable condition. I would see the doctor for an evaluation before cutting out more foods.

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I would also guess another food intolerance or issue other than celiac since you've been gluten-free for a while and probably have the diet down to the point where you're not making many mistakes. I found out I was intolerant to peanuts nine months after going gluten-free and I get the same symptoms as gluten so it was hard to track down.

You might also have a minor intolerance. I find I feel sick if I eat too much dairy (like more than three servings in a day which I really shouldn't be doing anyway). It's hard to track down things like that because you eat it one day and feel fine, eat it the next day and feel yucky. Intolerances based on quantity are a pain.

You could also consider things like chemicals. Did you get new carpet or change cleaning products? Chemical exposure often makes me feel glutened (probably because gluten affects EVERYTHING in my body so if I feel sick at all it feels like gluten...) Or what about mold exposure?


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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I would also guess another food intolerance or issue other than celiac since you've been gluten-free for a while and probably have the diet down to the point where you're not making many mistakes. I found out I was intolerant to peanuts nine months after going gluten-free and I get the same symptoms as gluten so it was hard to track down.

You might also have a minor intolerance. I find I feel sick if I eat too much dairy (like more than three servings in a day which I really shouldn't be doing anyway). It's hard to track down things like that because you eat it one day and feel fine, eat it the next day and feel yucky. Intolerances based on quantity are a pain.

You could also consider things like chemicals. Did you get new carpet or change cleaning products? Chemical exposure often makes me feel glutened (probably because gluten affects EVERYTHING in my body so if I feel sick at all it feels like gluten...) Or what about mold exposure?

Thank you everyone for your posts and time.

Mamaloca, no, I don't eat any gluten on purpose maybe I didn't make that clear- I wouldn't touch the stuff, believe me! Patti and Lisa, thank you for your thoughts; I've been thinking about GYN problems as well although I've been TWICE this year, once to my regular and once for a second opinion (fibroids) And I HATE going to the doctor! But I may ask my regular physician to rerun the celiac panel especially to see if my tTG is up again.

I've kept a detailed food log every single day (with symptom info) for over a year, April, but I'll have to reread your post I think you're suggesting something different. It's not too hard to keep track of what Ieat as it's not much and pretty much the same bloody things over and over! Have to call Erewhon about their rice krispies still... I eat NO gluten, soy, corn, legumes, nightshades, almost no dairy (occassional chunk of cheddar), No coffee, tea, soda, candy, junk food, baked goods, ice cream, eggs.....blah, blah, blah..... What DO I eat? Pretty much organic beef, chicken, salmon, homemade rice milk, the Erewhon crispybrownrice, bananas, cherries, winter and summer squashes, carrots, occasional banana or cherry Larabar, occasional cheddar, occasional enjoylife choc chips, homegrown lettuce, basil (McCormick or fresh), swiss chard (sometimes greens are giving me IBSish stuff), grapes, haddock (fresh), white wine, blueberries when I can get them fresh which is going to be soon here in Maine!... occasional walnuts and almonds (from shell)- that's about it!

Thank you, about the chemicals and carpet. I have no wall to wall carpet and am not a fan of chemicals in my home- use Seventh Gen to clean or vinegar and water or peppermint soap-

SOMETIMES Lysol. I DO have two teenagers and two big dogs and 5 cats who occasionally are stressful- the teenagers mostly! Love 'em too much, though! I'm going off...

Thank you all. If I drag myself to the doctor, I will let you know. Thank you so much for your time!

lisa

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