Help- An Appeal To Veterans Particularly- Reacting Again!

[oceangirl]

Hi everyone,

I can't believe this. After FINALLY (2 and 1/2 years later) getting my tTg in the normal range a month ago, I am having the most awful week and I don't know what's wrong! Here's the thing: 8 days ago I started having horrible distension ( I look 5 months pregnant), bloating, gas, cramping and vague nausea pretty much constantly but particularly after eating. It feels like I am reacting to EVERYTHING! BMs give only slight relief and then it starts again. I had to stay home from work today; yesterday was so miserable. Gluten does this to me although it usually gives me other things like hideous left-side pain, mouth ulcers, terrible abdominal pain and I don't have that, just cramping, and left hip pain which I DON'T have right now. I feel like I'm going to lose my mind; I can't live like this. It is NOT a stomach bug because those hit like a ton of bricks. This is just constant misery.

I've been gluten, soy, dairy, legume, corn, egg and nightshade-free for 2 years. Have put corn back in (in the form of Fritos corn chips) as of last November as well as cheddar cheese and tomatoes and felt well for all these months until now. I have a gluten-free house, never eat out , make most of my food from scratch, and have no new personal products. Wondering if it's something else like pancreatic insufficiency or some other hideous thing...

Here is what I eat:

bananas

raw sugar (3 tables a day in hot water)

meat, chicken (organic), salmon, haddock, any fresh fish

FRITOS (about 1 cup)

Tinkyada (sometimes)

zucchini, summer squash, tomatoes, carrots, butternut or acorn squash, swiss chard, romaine, shallots, garlic (sometimes) Redmond salt, fresh basil or McCormick basil or dill

strawberries (sometimes)

Cabot cheddar cheese (sometimes)

French wine

almonds, cashews or pecans (rarely)

Larabars (rarely)

special treat, VERY rarely: Gluten-free pantry homemade danish with my own homemade strawberry jam

I use Fructis Shampoo, rinse with cider vinegar, wear Lancome Rouge Absolu lipstick and frequently use Purell at school on my hands to desanitize. We wash dishes with Seventh Generation soap, brush and floss with Tom's of Maine

Any thoughts or help would be so appreciated; I feel like I'm losing my whole life again and I HAVE to work! Thank you so much for your time.

Feeling so yucky,

lisa

[Lisa]

lisa I am sorry that you are feeling so miserable.

You, by far, exceed my expertise and I can only relate to gluten issues. I have heard that Lays Products often get reactions from many people here on this forum through cross contamination. Perhaps the Fritos may be causing your symptoms.

It's awful hard to be a detective. I hope you feel better soon.

[Phyllis28]

I agree with Momma Goose. The primary suspect is the Fritos. If available in your area, Mission Tortilla Chips are gluten free. You might want to try going back to all natural foods (no processed foods) for a little while before trying any processed foods.

Also, I would suggest that you double check the ingredients in your personal items and cleaning supplies, if you have not already done so.

Hope you feel better soon.

[gluten15]

While I am not a veteran..you have answered so many things for me that I wanted to input something.

It might be the Carrageenan in your Tom's paste. Sometimes this can cause what symptoms you are having and it can take a while to react to it.

Once I gave up Silk Soymilk and Tom's..my insides were not having such severe trouble.

It doesn't appear that you do any rice milk as some also contain it.

Once I caught onto this item having a possible affect on my digestive system and started to really read labels..I was amazed at how many things that I thought were healthy contained this item.

There are still many opinions out there on Carrageenan and as I am learning we each have to go with what we believe is affecting us or what works for us.

When I get the fix for wanting a snack that's somewhat healthy and a corn product..I like Garden Of Edan's blue corn chips. Very basic, organic and not overly processed. Is there some benefit to Frito's corn chips or is that just a corn snack that many here have found is safe?

Sorry about your trouble and good luck.

[YoloGx]

While I am not a veteran..you have answered so many things for me that I wanted to input something.

It might be the Carrageenan in your Tom's paste. Sometimes this can cause what symptoms you are having and it can take a while to react to it.

Once I gave up Silk Soymilk and Tom's..my insides were not having such severe trouble.

It doesn't appear that you do any rice milk as some also contain it.

Once I caught onto this item having a possible affect on my digestive system and started to really read labels..I was amazed at how many things that I thought were healthy contained this item.

There are still many opinions out there on Carrageenan and as I am learning we each have to go with what we believe is affecting us or what works for us.

When I get the fix for wanting a snack that's somewhat healthy and a corn product..I like Garden Of Edan's blue corn chips. Very basic, organic and not overly processed. Is there some benefit to Frito's corn chips or is that just a corn snack that many here have found is safe?

Sorry about your trouble and good luck.

It's also possible you are having yeast/fungal problems due to the sugar etc. even if it isn't much it could create havoc.

I agree though, why Fritos? Its better to eat whole foods I have found, and not fried anything. I personally try to stay with the Paleo diet of some meat, lots of vegetables and some fruit--including roots and squash for carbs. For the most part I veer to grains only in the morning with quinoa or some ancient grain mixture for pancakes. I don't do well with eating that much corn or even brown rice however--especially not everyday. So maybe I am more sensitive than some.

Meanwhile I thought carageenan was derived from kelp. Do you suppose it somehow gets infected with gluten? Or is it just an individual allergy?

[gfpaperdoll]

I am weaning myself off fritos. I used to eat them because they taste darn good, they are convenient, you can get them everywhere on the spur of the moment & they are filling. I never had a problem with them. But lately it is hit or miss, sometimes I have a tummy ache when I eat them - enough that I am giving them up, plus I am going more Paleo anyway.

For you I would also suspect the cheese. Sometimes you can eat a little but if you keep eating it...

Hope you are feeling better soon.

[jerseyangel]

Hi Lisa,

Gosh, I'm sorry to hear that you're having problems again. I think it's one of the worst feelings to have come to a point where you are feeling consistantly better, and then something like this happens.

I kid you not--3 weeks ago, something similar happened to me. One day I was fine and then the next--bloating, cramping, some nausea--although no anxiety which for me is a hallmark.

I still don't know what happened--could have been CC, could have been a virus. It lasted a full week, then went as quickly as it came. This year, there seem to be a lot of viruses going around that don't seem to fit the usual patterns. Like the others, I would suspect Fritos out of all the foods you eat. I personally found that Frito Lay products (except Stax) are hit and miss. You can go for a stretch with no problems at all--then bam.

Maybe you got a bad bag, and ate it a little more often than usual and that was enough to trigger a reaction.

This will pass, Lisa. I think that some of us, no matter how careful we are, will still get a mystery reaction now and then. What always scares me the most about it is that I'm petrified that I'll end up back at square one--I think it's hard not to think about that, but you won't lose all the ground you made.

Take care

[oceangirl]

Thank you, everyone, SO much for your replies. I have taken out the Fritos (just today). In response, I had thought they were "safe" and where I'd been eating them for a few months with no major problems I thought I'd found a snack food I could grab because I cook EVERYTHING and lead a very busy life! (It was nice to be "normal" for awhile)

I have also removed cheese and am trying to cut back on sugar, but, man, I don't eat much anyway and really don't need to lose weight! I still feel awful. My doctor is not in today but I have some info on WomentoWomen's Health Center in Yarmouth, Me. founded by Dr. Christiane Northrup, and they have a whole program on digestive health including diagnosis of yeast issues. I think I may get my dr. to refer me... if this doesn't get worse first.

Small suspicion of appendix trouble as my family has long history of abnormal presentation and my sister almost died of a ruptured appendix when she was in college as they waited 48 HOURS after it ruptured when she was almost dead anyway to do exploratory surgery. That was at Hartford Hospital (1970s) with nine different doctors assessing her! That said, I don't really think it's that...

Sorry to go on. Thank you all very much again,

lisa

[oceangirl]

Patti,

Your response just brought me to tears because you expressed EXACTLY what I am afraid of: that this will not go away this time! Thank you for your kind encouragement; when I get in one of these patches it feels like the end of the world and I don't know how my family can stand being with someone who has to always run to the bathroom and feels luck an ugly, yucky person!

That is VERY interesting about your virus; part of me is praying it will just go away as fast as it came- I'm glad it did for you.

The only other thing that MAY be impacting is I've had a broken filling (amalgam) for over two months (waiting to get filled that long- I go to get it filled today). I've wondered if some infection or part of the amalgam (which I keep breaking off when I chew) is affecting my digestive track...

Take care, Patti,

lisa

[jerseyangel]

Lisa,

I'm glad if I helped you feel a little less "alone" with your fears. I understand completely

It's possible that your broken filling could be contributing--an infection can make us feel ill.

Hopefully the whole episode will be over for you soon

[greendog]

Don't discount a flu type virus. There is one hitting the Indianapolis area that once it hits a family member they all get it. My symptoms were loss of appetite (nothing sounded good), cramps, gas, no GIs, fatigue and it went on for at least 10 days. I finally was able to eat some Thai Kitchen Noodles, but food did not appeal to me at all while I had that particular flu. The irony is that soon as I felt like eating I went to Cracker Barrell and got in to some Gluten. No justice. and, like the others say, eliminate what you have added over the past month and do the drill. Main thing is don't give up, stay gluten clean and you can get through it. Can take a while, but don't give up.

[gluten15]

It's also possible you are having yeast/fungal problems due to the sugar etc. even if it isn't much it could create havoc.

I agree though, why Fritos? Its better to eat whole foods I have found, and not fried anything. I personally try to stay with the Paleo diet of some meat, lots of vegetables and some fruit--including roots and squash for carbs. For the most part I veer to grains only in the morning with quinoa or some ancient grain mixture for pancakes. I don't do well with eating that much corn or even brown rice however--especially not everyday. So maybe I am more sensitive than some.

Meanwhile I thought carageenan was derived from kelp. Do you suppose it somehow gets infected with gluten? Or is it just an individual allergy?

After looking into anything and everything that might bother me... i read about how carageenan can cause bowel trouble in some and be hard in digestion..si I made a personal choice to cut anything that had that in it.

Nothing to do with gluten or cross contamination.

[HAK1031]

Hartford Hostpital...*shakes head*. When my mom was delivering my brother, they told her she needed a c-section. She found out later that this was only a matter of convenience for the doctor as labor was progressing normally. It also complicated my 10lb. 4oz. birth 8 years down the road. That was in the 80s.

I hope you feel better...I agree with everyone else on the fritos, they have caused problems for some people. Good luck! Keep us posted.

[YoloGx]

Patti,

Your response just brought me to tears because you expressed EXACTLY what I am afraid of: that this will not go away this time! Thank you for your kind encouragement; when I get in one of these patches it feels like the end of the world and I don't know how my family can stand being with someone who has to always run to the bathroom and feels luck an ugly, yucky person!

That is VERY interesting about your virus; part of me is praying it will just go away as fast as it came- I'm glad it did for you.

The only other thing that MAY be impacting is I've had a broken filling (amalgam) for over two months (waiting to get filled that long- I go to get it filled today). I've wondered if some infection or part of the amalgam (which I keep breaking off when I chew) is affecting my digestive track...

Take care, Patti,

lisa

Hi Patti,

It definitely also could be the filling adding to your difficulties. Amalgams have mercury in them and are very dangerous for the immune system. Just having 3 such fillings can reduce one's immune system by a third according to studies done in Germany. I suggest you have it removed and replaced if at all possible.

You might need to take some detox stuff to protect you from the released mercury meanwhile. There's a lot of info about it on the net. I liked the homeopathic "dentox" though it was hard on me at first. The usual detox herbs will also help plus various supplements I have now forgotten. I had to be careful since some did not agree with me. Eating lots of cilantro and doing saunas also helps.

Go slow if you plan to remove more fillings. A body can only handle one removal a month due to released mercury. But its worth it. I found there were whole areas of things I had actually learned that I thought I hadn't. A year after I had my mercury amalgam fillings replaced I finally understood Spanish I had studied 20 years before and had thought I was an idiot at plus suddenly I became mechanically intelligent and handy whereas before I was all thumbs.

By the way, from what I have read, the mercury tends to make one have yeast overgrowth as the body's protection against the metal.

Yolo

[oceangirl]

Hi, Yolo,

Yes, I know all the research on amalgams and I sure wish I didn't have a MOUTHFUL of them! (Just got some more mercury today having a broken one fixed) My dentist who is very bright and caring thinks the mercury thing is hogwash- I don't know. But, seriously, I have very soft teeth with a TON of dental work and could not possibly either afford or probably withstand the removal of all of them. My mother, too, who is almost 78 has TONS of amalgam fillings and she is a healthy girl with no stomach issues! (Envy)

But, thank you, it does haunt me a bit...

lisa

[oceangirl]

Oh, by the way ( I'll blame it on the amalgams) I do know it's a "digestive TRACT"!

Must preserve the English language in this age of computer speak!

lisa

[Rachel--24]

I'm another one who believes that amalgams can be responsible for many health issues...including digestive.

I had a broken amalgam (swallowed parts of it) that I left alone for 2 years. I was healthy all my life but around that time I developed Graves Disease (hyperthyroidism)....other than that I still felt fine and ate whatever I wanted. I'd never had food intolerances or any type of sensitivities all my life.

Two years after my amalgam broke I went to the dentist....he noticed it and said that the broken one and one other (I had a total of 4) needed to be replaced due to deterioration.

He drilled them both out using no safety precautions. At the time I knew nothing about mercury and I did nothing to detox following the unsafe removals.

In the weeks following the removals I started experiencing symptoms which progressed rapidly. 3 months after the removals I was on disability not knowing what was going on with my body.

I became very sensitive to foods and chemicals...my list of safe foods can be counted on one hand. Because of the severity of symptoms and the timing of when this all started I clued into mercury early on....however, finding knowledgable Dr.'s who were not dismissive took much longer. In the 4 years I had to wait I had every test imaginable...all coming back negative.

After 4 years I was finally diagnosed with mercury toxicty...along with it I have many other toxic heavy metals (arsenic, lead, cadmium, etc). I began treatment about 4 months ago.

Because of the mercury I have some gut infections (yeast & parasites), leaky gut, multiple chemical sensitivity and an inability to break down food chemicals...most likely due to blocked enzymes because of the heavy metals. My digestive system is a mess.

Plenty of people dont experience this type of decline in health from their amalgams but even minor seemingly unrelated symptoms or conditions can be caused by the fillings.

Because we are all different one body may be able to cope with the mercury burden while the next cannot. At any time the immune system may lose its ability to cope...some of us never get to that point but unfortunately some of us do. Genetics, amount of exposure and other predisposing factors have alot to do with who gets sick and who doesnt.

[YoloGx]

Hi, Yolo,

Yes, I know all the research on amalgams and I sure wish I didn't have a MOUTHFUL of them! (Just got some more mercury today having a broken one fixed) My dentist who is very bright and caring thinks the mercury thing is hogwash- I don't know. But, seriously, I have very soft teeth with a TON of dental work and could not possibly either afford or probably withstand the removal of all of them. My mother, too, who is almost 78 has TONS of amalgam fillings and she is a healthy girl with no stomach issues! (Envy)

But, thank you, it does haunt me a bit...

lisa

Hi Lisa,

Well you know it is the malabsorption of minerals that makes your teeth soft. It often goes with the celiac.

I assume you are taking vitamin D (I like cod liver oil the best)? and a good calcium supplement? And lots of minerals I hope? Plus enzymes?

If the calcium still isn't working, I suggest you try E-Zorb. It seems to work best for me. Nothing else really has though I did improve some just avoiding the gluten more seriously and taking the D. However it was not enough. The E-zorb is a little spendy but if you get it in powdered form it lasts a long time. You can find it on the Net. I find I only need to take the minimum amount which is really pretty amazing. I actually had too much calcium for a brief period of time, which was a real first for me! Sometimes I go off it due to cost but soon become uncomfortable again. Then I go back on it and feel way better

[oceangirl]

Thank you Rachel and Yolo,

Yes, I know, the amalgams worry me but it really is out of the question right now unless my insurance would pay for it which I doubt. I will keep it in mind. I seriously have amalgam fillings in all my bottom back and most of my upper teeth as well! No new cavities in years, though, just wear and tear. Thank you for sharing your stories; I really appreciate it. Rachel I have been reading about your journey for a couple of years now and I know it's been a hard one! I'm glad you are getting help and hope you are feeling better.

A couple of questions: Rachel, how do you get tested for mercury toxicity? Yolo, how much (avg) does it cost to get one amalgam out? Also, would you mind sharing the names of your enzyme companies? I need gluten, soy free at least. Also the name of a probiotic that is gluten and soy free? Thanks so much!

I don't take calcium or magnesium much to my GYN's chagrin (I'm 50) but she also can't believe my bone density test which was excellent. (I think being a runner helps)

I had no Fritos yesterday and at this moment feel a little better but not good yet. We'll see...

Thank you all for your responses. Gluten15, I'll keep the carageenan in mind as well...

Take care,

lisa

[spunky]

My thoughts...after having been gluten free now for 2 years.

Besides suspecting the Frito-Lay products, I would check into how the organic chickens are fed.

According to John Symes (a.k.a. "Dogtor J"), a vet in Alabama who has celiac and studies the effects of gluten on both people and animals, has said that many "organic" chickens are fed with a very high sodium, really almost inedible type of wheat that makes them retain water so they are plump and juicy. He says he has seen dogs react to chicken in the same ways as they do being fed gluten themselves, and he believes it's possible the gluten proteins are surviving in the organic chickens.

If you could find out how the chickens are fed... or buy Amish chicken or from some local farmer... so you can know if they were fed the normal chicken scratch... more corn-based, that might be a helpful thing.

[YoloGx]

Thank you Rachel and Yolo,

Yes, I know, the amalgams worry me but it really is out of the question right now unless my insurance would pay for it which I doubt. I will keep it in mind. I seriously have amalgam fillings in all my bottom back and most of my upper teeth as well! No new cavities in years, though, just wear and tear. Thank you for sharing your stories; I really appreciate it. Rachel I have been reading about your journey for a couple of years now and I know it's been a hard one! I'm glad you are getting help and hope you are feeling better.

A couple of questions: Rachel, how do you get tested for mercury toxicity? Yolo, how much (avg) does it cost to get one amalgam out? Also, would you mind sharing the names of your enzyme companies? I need gluten, soy free at least. Also the name of a probiotic that is gluten and soy free? Thanks so much!

I don't take calcium or magnesium much to my GYN's chagrin (I'm 50) but she also can't believe my bone density test which was excellent. (I think being a runner helps)

I had no Fritos yesterday and at this moment feel a little better but not good yet. We'll see...

Thank you all for your responses. Gluten15, I'll keep the carageenan in mind as well...

Take care,

lisa

Hi Lisa,

Its been quite a while since I had my fillings replaced so I have forgotten what it cost. I did some trades on a few of them too since I am an artist. However my understanding is that the cost isn't too bad.

You might want to see if you can get Blue Cross Dental Insurance. Call around your area and find out the usual cost. I would guess something like $150 a tooth?? I think it was half that years ago.

I suggest you use a doctor versed in using the new materials and removing the old amalgam safely, one at a time. You don't want to experience what Rachel went through--as did my ex too by the way. I also was quite depressed after mine were replaced without knowing why the first year afterwards. It was 20 years ago after all, before much was known about the hazards. It was worth it however since the following year my mechanical ability came through plus the Spanish--and better health etc. Plus I think using the detox herbs as I have fairly regularly done since the mid seventies really helped me avoid some of the worst symptoms like Rachel unfortunately went through.

As far as enzymes Co.'s go, let's hope its OK to list them here: I like Now and Nature's Life, although I am sure there are many others. Just check out the ingredients. The Nature's Life was a little more difficult. I had to check out the website.

I am glad your bone density came out well, but your soft teeth worry me. At least try to add some more calcium to your diet. It might help. I like no-fat organic yogurt (you can make your own for cheaper) plus I often slow cook chicken and then gnaw on the bones! Some accuse me of being primitive however its a good source of calcium and other minerals. That and vitamin K--from lots of veggies, and/or alfalfa tablets or concentrate. Alfalfa by the way helps protect the lining of the gut and creates a safe antidote to cholesterol formation as well as being a good detoxifier all in itself. Don't take alfalfa however if you think you might get lupus or are taking coumadin. Adding some kelp to your diet will also help add minerals...

As far as a safe pro-biotic, that was a little difficult however I found one that works for me from Jarro with F.O.S that doesn't use carrots as a base (of which I am extremely allergic to and usually they don't list it)--but it won't work for you since you can't have any soy. However I believe Jarro has a similar pro-biotic that does use carrots as its base. I can't swear however I am almost certain. I will check online later. Also Natren's has a basic powder that just uses whey (MegaDophilus). I don't trust the enterically coated caps so I often just use the refrigerated powder...

[oceangirl]

Thank you Spunky and Yolo for all your thoughts. I very much appreciate you taking the time and will consider all you've said.

I will say, cautiously, that since taking the Fritos out I am much less bloated and feeling much better. We'll see if it persists!

Take care,

lisa