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Is Gluten Causing Me Permanent Damage?
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Hello and thank you for taking the time to read my post.

A few months ago, I adopted what I call a gluten light lifestyle. I do not eat breads, cookies, pasta, etc. However, I still use Campbell’s Cream of Mushroom soup when making casseroles as an example of gluten light.

My Physician’s Assistant recommended I try a gluten free diet to see if it would alleviate any of the joint pain in my hands. My joint pain has defied diagnosis but it is currently under control with medication and a gluten light lifestyle.

I have experienced good results with removing most of my gluten from my diet. My hands feel practically normal and my digestive system has improved remarkably. What convinced me beyond a doubt that I am gluten sensitive at the least, was an incident at Thanksgiving. I chose to have 2-3 bites of stuffing. My hands ached within a couple of hours and stayed that way for 4 days. So, it’s gluten light for me without little tastes along the way.

I have not been tested for anything regarding gluten or Celiac. My personal experiences are enough for me to keep with the new lifestyle. However, I was told by a lady with Celiac that I could be doing permanent damage to myself by not going completely gluten free. Is this true? Could I be doing myself harm without even knowing it?

Thank you in advance for your thoughts on the matter.

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Ads by Google:

If you have Celiac, you would be damaging yourself.

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms."

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Hello and thank you for taking the time to read my post.

A few months ago, I adopted what I call a gluten light lifestyle. I do not eat breads, cookies, pasta, etc. However, I still use Campbell’s Cream of Mushroom soup when making casseroles as an example of gluten light.

My Physician’s Assistant recommended I try a gluten free diet to see if it would alleviate any of the joint pain in my hands. My joint pain has defied diagnosis but it is currently under control with medication and a gluten light lifestyle.

I have experienced good results with removing most of my gluten from my diet. My hands feel practically normal and my digestive system has improved remarkably. What convinced me beyond a doubt that I am gluten sensitive at the least, was an incident at Thanksgiving. I chose to have 2-3 bites of stuffing. My hands ached within a couple of hours and stayed that way for 4 days. So, it’s gluten light for me without little tastes along the way.

I have not been tested for anything regarding gluten or Celiac. My personal experiences are enough for me to keep with the new lifestyle. However, I was told by a lady with Celiac that I could be doing permanent damage to myself by not going completely gluten free. Is this true? Could I be doing myself harm without even knowing it?

Thank you in advance for your thoughts on the matter.

What Kareng said. If you do have celiac, you are damaging yourself.

You spoke of your joint pain, but did not elaborate your digestive symptoms. What digestive symptoms have you seen improve on a gluten-light diet?

If you wanted to get tested for an "official" diagnosis, you'd have to go back to eating a little more gluten than you are. If you need the support of a diagnosis to convince you, it might be worth it. If you can go completely gluten free fore several weeks to 3 months, you might have enough of an answer in seeing how terrific you feel when completely off gluten!

There are some great substitutes for the canned soups we use in casseroles! We've done a pretty good "Campbell's Green Bean Casserole" using one of those in a box...I think it is by Pacific Brand...mushroom soup that's pretty good. They also make a condenses cream of chicken.

Or, it just doesn't take much time to make a white sauce...you can make your own "canned soup substitute" using either corn starch or "glutenous" rice flour (NOT to be confused with "white rice flour").

For canned cream of chicken, make extra-thick white sauce with chicken broth. For canned mushroom substitute, make extra-thick white sauce with some chopped, fresh mushrooms thrown in. I saute my mushrooms a little in the butter I use for the sauce, it's darn good according to my family!

You might also get your thyroid checked. I used to have a lot of aches and pains in my hands and shoulders. Between getting rid of gluten and getting my thyroid squared away, the pain is gone.

Welcome to the forum!

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First of all, I'd like to thank both of you for responding to my inquiry. Looks like a long road ahead but at least I have people to help me along the way :)

As for my digestive symptoms, that's complicated. I am 47 years old and was born with a heart murmur. Because of that, I have had to take antibiotics twice a year before dental cleanings. In addition to that, when I got sick I would be put on antibiotics. I have had bowel issues my whole life. It took me years to figure out it was most likely due to the antibiotics. Eventually, I went to a specialist who told me I had IBS and prescribed tranquilizers and sedatives. I didn’t want to live that way. So, I did more research and discovered acidophilus. It helped. But, it didn’t fix everything. My first objective when entering a store would be to know where the bathroom was just in case an emergency came up and one often did. My current doctor prescribed a home remedy of several supplements including acidophilus that I blend together and take daily. It works rather well. But, since I’ve reduced gluten, I no longer need to take that either. Also, I no longer need to premed for dental cleanings. The American Heart Association changed its stance on the practice. So, I think my gut is on the road to recovery. At least I’m feeling better.

I thought I was doing pretty well about cutting out gluten. I figured the small amounts in the cream of mushroom wouldn’t be that big a deal. But, it sounds like that isn’t the case. After reading so much about testing being less than accurate, I’m not sure I want to go through the pain of eating gluten again to get an iffy result.

I’ve also read that toothpaste and make up can have gluten in them too. This is getting a bit overwhelming for me. I’ll need to take this one step at a time.

I’ll check out your links and advice for food substitutions. I’ll eliminate more and more as I go along. I’m certain the website and its contributors will prove to be valuable sources.

I believe my thyroid has already been cleared. But, I've had so many tests regarding my joint pain I get confused. I'll go back and double check that it's fine.

Thanks Again!

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I don't think testing is very inaccurate. I have seen several sites saying they are very accurate. It's just whether you get the right tests, the right advice to be eating gluten, a GI who will biopsy more than one place, etc that make it inaccurate.

http://www.massgeneral.org/children/services/celiac-disease/celiac-disease-faq.aspx

"How accurate are the celiac blood tests?

The current diagnostic tests for celiac disease are very accurate, particularly when tTG and anti-endomysial antibodies are elevated. The isolated presence of anti-gliadin antibodies does not necessarily imply that the subject is affected by celiac disease, with the exception of children under the age of 2 in which tTG and EMA may not be present."

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Going gluten free can be overwhelming, but if you're already "gluten light" and feeling so much better, then it would be worth it to go fully gluten free.

As much as it might be useful to get tested, if pain and problems return just from a few bites of really gluteny things, then it might not be the best thing for your health. However, that might mean that the best thing for you is to be completely gluten free.

If you do have Celiac, or even if you are gluten intolerant/sensitive, then you shouldn't be eating any gluten at all. Even tiny amounts will do damage, even if its slow and you don't feel it.

It's not that much of a stretch to cut it out completely. There are lots of substitutes out there now.

So be brave and decide what's best for you.

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I appreciate everyone's input and suggestions. My better health is quite a movtivator. So, gluten free here I come :)

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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