HavaneseMom

Your tonsils are part of your lymphatic system and the stones can be causes by a few different things.

Here is a really good read on it:

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I have cruddy tonsils, but have found that when I maintain a regular exercise program, they clear up and are nice and clean and small. It takes me about 2-3 weeks of daily 30 minute walks on the treadmill where I break a good sweat before they clear up and look pretty again. If I don't keep the exercise up, they go back to being cruddy. The article in the link explains how exercise can improve your lymph flow and improve your tonsil health. ( I have never used the product in the link by the way, I just thought the article they wrote was a easy read and explained everything well)

Hi There,

It took me 5 1/2 months of being gluten free before my stomach pain let up. I am still recovering from other symptoms, but life is much improved without the constant stomach pain. It can take up to 2 years for the small intestine to heal and it seems to take a while for some of us to start to feel better. If you can eliminate dairy and eating out for a couple of months it should help. That is what I did and I saw great improvement. Keep in touch with your doctors about any troubling symptoms you have too. Good luck!

Sorry to assume...your kids are cuties!

Thanks! :-)

I'm definitely going to ask the GI. Out of curiosity...how old are your kids and did they test positive?

Hi Icelandgirl,

I just realized I should have put more thought in to my user name. I just have the two Havanese (that's the name of their breed) dog fur kids you see in my profile picture. I don't have any kids otherwise. Sorry for the confusion!

But as far as testing goes, my mom and my sister have both been tested and their results came back negative. My dad and two other siblings choose not to be tested. I do have a friend at work who's dad has Celiac and three out of the six children in their family have it. I think that is much higher odds than usual in their case. I just did a quick search and read on the University of Chicago site that the rate in first degree relatives for Celiac is 1 in 22.

Here's the link if you are interested:

Open Original Shared Link

Oh no! Hope they get to the bottom of it and you feel better soon.

You might just be having a bad day. I have noticed a lot of people, including myself have felt pretty good right at the beginning of the gluten free diet, then they will revert back to having issues and go back and forth between feeling good and having issues for a while. Hopefully it is just this one bad day for you. The only thing I can see on your list of foods that might cause some trouble would be the Black Beans. They can be a hard to digest food and cause a lot of internal gas if you aren't used to them. Oh, and watch out for artificial sweetener. It can be a problem for some people and cause cramping, etc. I haven't touched the stuff in 15 years, makes me very ill. Better luck tomorrow :-)

Hi AnnaChristine18,

I'm glad you were able to find out you have SIBO and that treating it may be the answer to your ongoing problems.

I don't know the answers to you questions, but I just wanted to mention to you that anti-biotics can cause a lot of digestive distress while you are taking them. They make me feel like death warmed over during treatment and my digestive system is off for a good month after taking them. I really dread taking anti-biotics, but they do typically do their job. I just didn't want you to get too discouraged with how you are feeling during your treatment since you still have 15 days to go. Keep in touch with the doctor at the Celiac Center if they start to make you feel too sick. Good Luck!

I think he should definitely pay you for the lesson. At least give you your co-pay back . Just kidding, we know that's not going to happen.

After I saw your posts about getting your kids tested, I remembered something my GI doctor told me right after he gave me my diagnosis.

He told me that all of my first degree relatives should be tested now, and if they come back negative at this time, they should all be tested again every 2 years going forward. I think it will be easy breezy to get your kids test approved. Your GI doctor may even be able to set it up for you.

Good luck!

Do you have a dedicated gluten free bakery in your town?

I think the one where I live is responsible for helping me gain about 10 lbs during my first 6 months gluten free ( I did not need to gain weight btw). Not exactly the healthiest way to gain weight, but very enjoyable.

Thanks for your advice Havanesemom...I don't need a referral either. I scheduled an appointment for next week with a GI for a consultation.

Great news! Let us know how your appointment goes.

Hi Icelandgirl,

So sorry to hear you had such a bad doctors visit.

If it were me, I would ask him to refer you to the GI doctor he called to ask about Celiac Disease. I would go over you original result with the GI specialist and let them know that you are unable to do a gluten challenge for the biopsy, but want to monitor your Celiac anti-bodies and be tested for nutritional deficiencies. I do think it is important for those test to be done and it sounds like it wasn't?

From my experience, the Primary Care Physicians I have seen know little about Celiac and the long term effects it can have on us, and don't take it very seriously. My GI doctor has been watching my bloodwork and has me scheduled for yearly testing. I wasted a lot of time trying to stick with my Primary Care doctor for everything, but after my experience with getting diagnosed I realize that the specialist are there for a reason and I need to use them - even though I am very fearful about seeing new doctors.

If you are looking for a new doctor, try typing the name of your city in the search engine on this site. There might be some threads that come up naming referrals for your area. Also, I waited forever for my doc to refer me to a GI and found out later that my insurance didn't actually require a referral to specialist. You might be able to bypass waiting for a referral if you find a GI you want to see depending on your insurance.

Good luck!

Hi Everyone,

I had asked a couple of questions regarding the new US FDA Labeling Laws in another post, and one of the wonderful moderators mentioned that a lot of people have questions about it, and suggested I should start a new topic to open the subject up for discussion.

My questions were:

When will the new law for gluten free food labeling go in to effect?

What exactly will the new law mean as far as testing for gluten in the finished product goes?

Will manufacturers have to disclose if the facility or equipment is shared under the new law? (From what I understand, this is voluntary right now)

From what I could find online, it looks like the "Rule" (they are not calling it a law), went in to effect in August of 2013, but they gave manufacturers a year to meet the deadline for compliance, which is August of 2014 (very soon!).

It also appears that the FDA is not requiring manufacturers to test their finished products before labeling them gluten free. The FDA would have the authority to monitor a product that has been reported as possibly containing gluten. It looks like it will be very important for us to report products that we believe are in violation of this rule to make it work for us.

I didn't see any information regarding whether or not a manufacturer will be required to disclose if their facility or equipment is shared under the new rule. This is very important information and it would do us a great service if they were required to state their equipment was shared. Does anyone know if that will be happening?

If anyone has any additional information or questions they would like to share, please do.

I know some of you go to seminars, etc, and have a much better understanding of the new rule than myself.

Here are some helpful links I was able to find regarding the rule:

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Maybe???

Can I ask you which brand it was that made you feel ill? I have felt a little off after eating a particular pre-packaged brand of grass fed beef, but I'm not sure how it would be from gluten, so I just assumed it didn't agree with me.

Otherwise, if you are buying it from the butcher case at the grocery store, I have read that they sometimes re-grind the beef on site and it could possibly get cross-contaminated depending on their handling practices or if there are breaded products in the same case. I do think it would be unusual for there to be problem with ground beef in general though.

HavaneseMom - if it makes you feel any better I once posted a question about iron and ferritin saturation levels that were '-3' and '-3%' and how it was possible for me to have -3% saturation. Turns out the '-' was just to signify that they were below the normal ranges...

Thanks for trying to make me feel better for asking that questions Katie!

I think I will just blame it on my anemia induced brain fog :-)

Haven't seen any statement from Bart yet.  Seems like he may be very inconstant in his practices.

I am very curious to see what he has to say about all of this.

If he is not already shaking in his boots, he should read this story about what can happen to people who make false gluten free claims:

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Way to go Gluten Free Watchdog! I subscribed yesterday and it looks like a great service to the Celiac community.

I am sure a lot of people are wondering about this. Maybe you could start a new thread in the " labeling" section? Maybe google a few links to discuss? I know the actual law is on- line and some articles from Celiac associations. That would be great!

Hi Karen,

That is a great idea! I will try to gather some facts and will start a topic a little later.

In the mean time, I did a quick Internet search and came across this article with 10 fast facts regarding the new label law. Facts 6 & 7 in this article are keeping me from getting overly excited about this new law really protecting us from situations like the cross contaminated cookies.

Here's a link to the article with the 10 fast facts if anyone is interested:

Open Original Shared Link

Thanks for answering all of my questions Gemini!

 

I'm going to run to the health store today to pick up the liquid iron you recommended. Hopefully it will do the trick. I do think it will help to try a different form of iron, since the one I am taking doesn't seem to be doing a whole lot to increase my numbers. I'm excited to try this one and see what happens.

 

I'm also thinking maybe I am still feeling a little run down because I am probably still in the healing process. I am 8 months gluten free now, but only started to feel better about 2 1/2 months or so ago. I was sick for quite a while before my diagnosis (although not as sick as many of the others on this forum), but have felt run down for as long as I can remember. I'm going to give it a little more time before I get too concerned about it. I think I just have to keep working on all of the things I need to do to increase my energy and lower my pain, like eating healthier, loosing weight and exercising.

 

I'm not a Type A personality like you mentioned you are, but I aspire to be :-) .

I have to say, I have been really inspired and encouraged through this process just reading about how many people on this board have powered through terrible health problems and still have a positive attitude and outlook. It has been really helpful and keeps me chugging along.

 

Thanks Again!

Oh My! Thanks for posting this Irish Heart. I just read through all of the links and received quite an education. "Gluten Free" splattered across a label does not always equal gluten free food!

 

I have a couple of questions I am hoping someone can answer or provide me with links to the answers.

When will the new law for gluten free food labeling go in to effect?

What exactly will the new law mean as far as testing for gluten in the finished product goes?

Will manufacturers have to disclose if the facility or equipment is shared under the new law? From what I understand, this is voluntary right now.

 

I am just really curious about this new law and how it would avoid something like this from happening in the future. There were a couple of cases in the links were it said that this manufacturer claimed his cookies were tested to around 5ppm of gluten. This was apparently way off base. I wonder who will be monitoring the testing under the new law?

Hi Katie,

 

I too had a big drop in my numbers at 3 months, then they continued to drop very slowly after that like yours are.

I just asked my gastro doc about it and he told me to try not to focus on the numbers too much during the first year because it can take time for them to lower to a normal range. The good people here on this forum told me the same thing when I was concerned.

 

I was just recently able to get my TTG IGA numbers under my labs reference range after 8 months gluten free.

I do have a shared kitchen like you do and my husband eats gluten every day (I wish he didn't!). He does have to prep all of his gluten filled foods on one counter only that is in the back corner of the kitchen. Would your family be willing to give you a counter space that is just for you to prep your gluten free food where gluten would be off limits?

 

The one major change I made when my labs came back still high a couple of months ago was that I completely quit eating out. I was only eating out once or twice a month or so before that, so for me it wasn't too big of a change and I wanted to eliminate any traces of gluten I might be getting from that. I'm not sure if that had anything to do with my progress or not, but I will say that I saw the most improvement in my health over that time period.

 

Good luck!

It is not easy to increase ferritin and iron. Iron is hard to absorb. Some important information......do not take any iron supplement within 1-2 hours of drinking tea, coffee or alcohol. These interfere with absorption. Take iron with a meal or some food as that makes it easier to be absorbed. Take a Vitamin C supplement with your iron because this enhances absorption. Eat good quality red meat once a week while trying to build iron because that is the best source of it.

I always hovered around the break point with iron and no matter what I did, the numbers were slow to rise or didn't rise much. Then I researched it and found I was doing it wrong. Doctors never tell you this stuff. Following this protocol, my ferritin number jumped the highest it ever did. Went up by 40 points and I think that was in 6 months to a year.

For your reading pleasure.....Open Original Shared Link

Thanks Gemini for the great information on boosting iron absorption. I was going to start a topics about it, but know I don't need to :-) .

I'm not sure if you will come back to read my reply, but if you do I was hoping to ask you a couple of questions.

Do you know which form of iron you were taking? I was taking Iron Picolinate and was feeling brighter, but they stopped manufacturing it for some reason. I switched to Iron Bisglycinate because it is a gentle form of iron, but my hair is falling out again and I'm feeling really sluggish, etc. I'm wondering if I should try a different form of iron to see if it works better for me and am curious which type you were taking when your iron level increased?

Also, did you see a big improvement in how you were feeling once your ferritin level finally had the large increase? I'm a little concerned that my docs might be overlooking some other problem. I'm just curious from your experience if you did feel a major difference in your health once your levels were up compared to when they were low?

Thanks so much!

Thanks everyone for the great suggestions! These ideas will be very helpful the next time someone ask me about Celiac.

OMG LauraTX!!! I can't believe I read that wrong - and posted about it!

So embarrasing! I remember that I did always have a problem with that in math class. Oh well...

They did run other test for Lupus etc, that came back fine also, so that is good news.

 

I went to my GI doctor yesterday and he suspects that alot of my ongoing issues are from my very low ferritin. It started at 2 and is only up to 9 after 8 months. He said I will probably feel the effects of low ferritin until it reaches 50 and said to plan on it taking a year to get up there. Hopefully it will be quicker than that cause this brain fog and pain can make it hard to function some days. At least my stomach ache is finally gone now and I can have a sense of humor about things.

 

Thanks for letting me know that test came back fine ;-)

Hi Everyone,

 

I am wondering what your definition of Celiac Disease is when people ask you what it is?

 

After hanging out on this forum for a while, I was starting to feel like everyone in the world knows what it is, but truth be told most of the people in my area really have no idea.

 

When the subject comes up and I try to explain it to them, I end up stumbling through a explaination that must not make a lot of sense based on the looks on their faces.

 

Do any of you have a short but thorough, standard definition of Celiac that you give people when they ask you "What's That?"

 

Thanks in Advance!

 

 

Hi Everyone,

 

I know some of you have been throught the ringer with a variety of health problems, so I was hoping someone here might be able to give me some insight on the test results I just received.

 

I was telling my doc about some long term pain I have, so he ran a blood test for Rheumatoid Factor.

My labs Reference range is 0-15 IU/mL, and my test came back at <10 .

No specific number was given for my result, just <10 . Kind of strange to me since that could mean anything over 10. Has anyone here had experience with this test and can help me interpret this result?

 

Thanks in advance!

 

Hi Everyone,

I just wanted to follow up on my original post with the great news I received today that my TTG IGA is now 17. It took almost 8 months, but all of my Celiac numbers are now below the normal reference range of less than 20! I thought I would share my excitement with the only other people in the world that could relate to being happy about this .

I did mention to the doctor that his Physicians Assistant had called me after my previous two test results came back to tell me that I must be consuming gluten because my TTG IGA was not under the normal reference range of 20. He was surprised by this and said he would talk to her about it. He then said that it's not something they usually focus on at all, and it takes time for the numbers to drop and I did a great job sticking to the gluten free diet - just like you all said.

Thanks to everyone here for the invaluable advice you have given. I couldn't have gotten this far without it.