Food allergies and family "doings"

[AnonymousDIL]

Happy, if you are serious about pursuing the Lyme's testing. You might want to find a "Lyme-literate" doctor in your area. Most doctors laugh off the whole Lyme disease thing.

My brother was bit, pulled the tick off, got the bulls eye rash, and his doctor gave him ointment for it. told him there is no way it is lyme because it was not a deer tick. Well, about two years later (months after my dad died) my brother was all freaked out because he thought he had hodgkin's disease (sp?) and was dying. Well, we had actually done some voluteer work with our balloon sculpting business for Lyme-Aid. My mom contacted them for more info on the disease. Brother went to a Lyme Doctor. They sent bloodwork across the country and it came back positive (the local test was a false negative). Nothing can be done to cure it at this point, but he can manage the symptoms (joint pain, fever, headaches, and 90 or more other posibilities). So, if you really think she could have it, push for the testing.

[SunnyDays09]

The blood work for celiac/gluten isn't 100% proof positive.  The biopsy is way better.  But even then a false/positive can be found.  Maybe his first test was false/positive?  Sounds like it.  What made the doc test him in the first place?  I believe his high amount of eating gluten showed the high load in his blood workup.  After being off of gluten for six to nine months and then re-testing, would be a better indicator, I believe.   The proteins are leaking out of his gut and getting into the blood either way it is NOT good.  There is a reason why the barrier is being broken and could eventually result in several auto-immune disease, including Celiac Disease, Type I Diabetes Mellitus, Autism, Inflammatory Bowel Disease, and atopic disorders such as Asthma, Rhinitis, Eczema, and Allergies to name a few.

I have read that wherever gluten goes, it alarms our immune system to react because it damages any tissue it touches. When our body surrounds and encloses it, we form granulomas. These hard nodules can develop in the liver, joints, and skin. Granulomas are like pearls formed by an oyster. Our body encapsulates gluten to keep it from hurting our tissues much like an oyster does a grain of sand that lodges inside of it.

The longer we eat gluten, the greater is our risk of developing other auto-immune disorders such as, Alopecia Areata (hair loss), Psoriasis (skin disorder), Addison's Disease (adrenal gland disorder), Grave's Disease (hyperthyroid disorder) and Auto-immune Hepatitis (liver disorder).

In auto-immune disorders, the development of anti-gliadin antibodies may be attributed to the response to food protein [from gluten] and is often not closely related with Celiac Disease.  (This could be my daughter - but to be safe, she is off the gluten.  No more unexplained tiredness.  No mouth sores.  But if she does get "glutened" she finds she is exhausted.  Gets mouth sores and sometimes eczema-like rashes!! But who knows for certain?)


With my daughter, she had Hashimoto's  found in 2005 when she lost half her thyroid to nodules.   While away from home she kept getting sicker and sicker and her medical treatment was not good.  She eventually was NOT healing.  She felt awful, always tired and depressed.  She was on so many meds without ever being tested for gluten.  Which most often goes hand in hand with Hashimotos and/or thyroid disease!!  Great.  All that suffering for nothing.

She moved back home and I began researching Hashimotos and told her to ask her doctor to test for gluten.  TaDA!!!  Then on a visit with another doctor, she was found to have polycystic ovarian syndrome.  All of these are auto immune disorders. 
 

[AnonymousDIL]

Wow! Just WOW! This is obviously a very harmful (and in some cases lethal) toxin. It should be regulated and not be allowed in our food supply. 

I think they did do a biopsy for DH. I don't know for sure though. It was before we were married. He lived at home and well, his mother did not feel that his fiancee was worthy of such information. Ugh! She still doesn't acknowledge that I'm his wife.

[luise.volta]

I'd bring my own stuff and not trust anybody unless I knew for sure they could be trusted. Sending love.

[SunnyDays09]

luise that is just what dd and I have decided.   She will reply to the rsvp, (she really wants to go) and will bring something to eat to leave in the car unless she needs to go get it during the meal. 

That way there is no wondering or guessing or even getting upset for those that "forget".  right? 

Sending love back....

[holliberri]

On the flip side of that, for anyone hosting guests that might need accommodating....if you're inviting them over to eat at your house, an extra special way of making them feel important is fixing something they can eat. We like our food with kicking hot around here, but if I'm having guests...I need to tone it down and skip the Triple X Hot Sauce and the chili powder.

I tried to go veg in 2009. I told my aunt. 7 months later she called me for dinner (I had long since fallen off the bandwagon by then). I told her I would come. She called me back two days later asking what scrumptious plate to make for the vegs among the family (it was just me!)....I told her, "Oh well, I wouldn't know, since I'm not one." But man, I felt very loved...I imagine this would be double for someone dealing with food allergies or an autoimmune disorder.

My mom refers to her problem as 'antisocial' and I can see why she feels it is that way. It would probably be a lot easier on here if people helped her and took her issue seriously. She doesn't really like asking for special accomodations. My girlfriend who just discovered she has Celiacs is in a support group for it b/c it can be isolating at times, particularly for young single people. Plus, if you've eaten something all your life and have had to give it up to feel better...while you do feel better, you do still miss the food you used to eat. I think having all of that food would be much like going to a bar as a recovering alcoholic at first: there is a lot of temptation in front of you...except a well recovered alcoholic can ask for a glass of water. Someone with Celiac's is often left with no choice but to go hungry.

[SunnyDays09]

Wow! Just WOW! This is obviously a very harmful (and in some cases lethal) toxin. It should be regulated and not be allowed in our food supply. 

I think they did do a biopsy for DH. I don't know for sure though. It was before we were married. He lived at home and well, his mother did not feel that his fiancee was worthy of such information. Ugh! She still doesn't acknowledge that I'm his wife.

He would have had the endoscopy for the biopsy, I hope I didn't confuse by saying the other scope is to be used, but I think did. oops.  I had both at the same time for anemia issues.  It is very confusing and after reading about the test, there should be many sample tissues taken, not just one or two.  So, it varies so much.  I don't think I want either scopes done again. Nope. 

[pam1]

People can be rude or sometimes just don't know.  Someone on another thread came up with the idea of bring your own plate, maybe that can be the new "in" thing.

Sometimes I just don't know, I guess I would be confused about gluten but it sounds like in the original post that it was ALL gluten.  Just a shame.

[AnonymousDIL]

People can be rude or sometimes just don't know.  Someone on another thread came up with the idea of bring your own plate, maybe that can be the new "in" thing.

Sometimes I just don't know, I guess I would be confused about gluten but it sounds like in the original post that it was ALL gluten.  Just a shame.

As far as "ALL Gluten," here's food for thought. You can have your steak, but no A1 sauce. ;-)

[holliberri]

The sauces are the tough part. Most people can avoid the grain products. They don't even think that sauces would cause a problem. I could see where an unsuspecting family member would unintentionally make a gluten free dish harmful to one with Celiac's.

[SunnyDays09]

People can be rude or sometimes just don't know.  Someone on another thread came up with the idea of bring your own plate, maybe that can be the new "in" thing.

Sometimes I just don't know, I guess I would be confused about gluten but it sounds like in the original post that it was ALL gluten.  Just a shame.

As far as "ALL Gluten," here's food for thought. You can have your steak, but no A1 sauce. ;-)

What???!!!  Noooo!!! They changed it?  nooooo. I knew Heinz 57 was not gluten free but A-1 now, too? 

Ingreds:  Tomato Puree (Water, Tomato Paste)Distilled Vinegar, Corn Syrup, Salt, Raisin Paste, Crushed Orange Puree, Spices and Herbs, Dried Garlic and Onion, Caramel Color, Potassium Sorbate (to Preserve Freshness)Xanthan Gum.

I have read where there may be animal flavorings in the sauce - but if Kraft won't let you know what is IN that stuff how can one be sure of gluten, too?  Darn. 

[Rose799]

In auto-immune disorders, the development of anti-gliadin antibodies may be attributed to the response to food protein [from gluten] and is often not closely related with Celiac Disease.  (This could be my daughter - but to be safe, she is off the gluten.  No more unexplained tiredness.  No mouth sores.  But if she does get "glutened" she finds she is exhausted.  Gets mouth sores and sometimes eczema-like rashes!! But who knows for certain?)


With my daughter, she had Hashimoto's  found in 2005 when she lost half her thyroid to nodules.   While away from home she kept getting sicker and sicker and her medical treatment was not good.  She eventually was NOT healing.  She felt awful, always tired and depressed.  She was on so many meds without ever being tested for gluten.  Which most often goes hand in hand with Hashimotos and/or thyroid disease!!  Great.  All that suffering for nothing.

She moved back home and I began researching Hashimotos and told her to ask her doctor to test for gluten.  TaDA!!!  Then on a visit with another doctor, she was found to have polycystic ovarian syndrome.  All of these are auto immune disorders.   

Thanks Happy,
My ydd is going through a similar experience.  She was diagnosed with Epstein Barr just over 1 yr ago, & also is hypothyroid.  Most recently, she was diagnosed with fibromyalgia.   Fatigue is a major concern for her.  I'm awed by how your dd responded to the gluten-free diet.  I'm going to suggest ydd be tested.  Thanks so much for the info...

[SunnyDays09]

You are so very welcome, Rose.  I have done so much research into this.  My dd had to completely eliminate all wheat, rye, barley (some oats).  I have done it at times myself and have found to have less transient symptoms like runny nose, blocked sinuses, tummy woes.  I think I might go gluten free myself since I have a history with ibs/gerd and those fun ones.

You might want to have you tested as well. 

I do hope your dd is having her entire thyroid panel done, not just tpo/tsh and a couple frees.  The entire panel needs to be done at least once a year.  She should also have ferritin AND iron checked.  Possibly the Vitamin B's since B12 is not absorbed when the digestive tract is compromised.  She might consider having her adrenals checked, too.  (Not too many doctors will - I am going to regret saying this but it is MY OPINION - I don't feel it is a big money maker.) 

I have a multi-nodular goiter as well since 2005.  I have ignored three surgeons insistence that I have surgery to find if it is cancerous.  Watching my dd go thru what she does with her Synthroid/Cytomel (hers were not cancer),  keeps me on Iodine/iodide and companion supplements.  I think my nodules are actually shrinking but I may be hyPERthyroid.  ug.

Good luck and good health to your dd and you.  The hormone balance is very crucial to her overall health.  You may want to see a DO or a more natural doctor that will consider everything to get her in balance.  Had my daughter had the proper care she may not be struggling with ovarian cysts that cause her to not ovulate anymore.  The doc just handed her birth control pills and said goodbye! 

[Rose799]

You have done your homework, Happy.  I did some research last night but didn't get far.  I appreciate all your suggestions & will pass them along to dd.   Two tests were done on her thyroid but I'm not certain which.  She still feels something is amok with her thyroid meds, but tests always come back in the normal range.  She's always sick with one thing or another.  Something has to give.  I have my own health issues, several of which fit the profile.  Maybe we'll go together for testing.  : )

Are the iodide tablets you're taking the same as the potassium/iodide tablets that may be used by the residents near the nuclear plant in Japan?   I know they're supposed to prevent thyroid cancer, but I thought they were only used for a limited period of time?

Thanks a lot, HappyDays

[SunnyDays09]

Well, sort of.  Iodoral does contain Iodide, but also Iodine.  Since we have been taking it for over a year, there was no worry if the "fallout" came stateside *which I believe it has been downplayed. 
   Most say don't take iodine but it's the first thing the government stock piles for nuclear ooopsies, makes ya wonder! 

I do a protocol that is popular with a Dr. Brownstein who believes iodine helps those with breast cancer.  Since I am not sure whether my nodules are cancer, I do the protocol. 

There are yes/no sides to the Iodine debate.  My dd has Hashi's and does iodine and feels fine.  Many cannot tho, and there are those that are allergic to iodine *although they do all you can eat shrimp dinners???  lol. 

We have tried the seaweeds/kelps but question the purity of those anymore or where they are actually farmed. 

I believe my health was screaming for Iodine in 2005 when the goiter was first found but not ONE doc prescribed - yet they used to.  I don't use table salt at all and am not a big seafood eater so I believe I was deficient and grew another thyroid. 

As for salt - give me the natural unprocessed sea salt please.  I wish we could go back to the days when there were no bromides in the baked goods - iodine was there and no fluoridation in the water.  Can't seem to find any good reasons why it's so, but the Iodine helps me get rid of some of these halides.  Sometimes it's fierce like the worst cleanse possible.  I drink the sea salt water and all is well.