HavaneseMom
-
Posts
185 -
Joined
-
Last visited
-
Days Won
1
Recent Profile Visitors
HavaneseMom's Achievements
-
-
I noticed you mentioned your hands weren't shaking at 9:30pm, but they would be in the A.M.
Is it before you eat breakfast, or shortly after?
I only ask because I tend to get shaky hands when I haven't had anything to eat for a while. I am guessing it has something to do with blood sugar. That could possibly explain why you shake in the morning, but not at night after dinner. I did ask my doctor about it, because it happens to me if I wait too long between any meal and he didn't seem concerned, but told me to eat small frequent meals or snack frequently and it does help me with that shaky feeling.
-
Hi StacyLynch,
Sorry to hear about his painful mouth ulcers. Another poster just started a topic about mouth sores and I mentioned a couple of things that have helped me here:
https://www.celiac.com/forums/topic/111132-tongue-sores-anyone-how-do-i-get-them-to-go-away/
I honestly don't know anything about seizures, but if it is causing him to bite or rub his teeth on his tongue in any way, that could lead to ulcers too.
-
Wow, that sounds painful and I'm sorry to hear your doctors haven't been able to help you yet. I would keep on them though, especially if it continues to progress.
I did have tongue sores for years before diagnosis, and they are 90% gone now. One tip I read here (I think from KarenG) is to use a SLS free toothpaste. The relief in tongue pain and sores that this change has made has been life altering for me. Here are a few that are out there, I use the Sensodyne Pronamel:
Today, there are many companies which make natural toothpastes free from Sodium Lauryl Sulfate. Some of the most popular are:
- Tom’s of Maine toothpaste
- Cardamon-fennel Herbal Toothpaste
- Rembrandt Premium Whitening Mint Toothpaste
- Jason Natural Cosmetics Toothpaste
- Squigle Enamel Saver Toothpaste
- Sensodyne ProNamel Mint Essense Toothpaste
- Auromere SLS Free Herbal Toothpaste
- Kiss My Face Kids Berry Smart Toothpaste
- Xyliwhite platinum mint
The other thing you might want to look in to is iron deficiency anemia. It can cause a swollen tongue, which your teeth will then rub on and cause sores. My tongue was huge by diagnosis and I didn't actually realize it because it had happened so gradually. My teeth were rubbing on the side of my tongue constantly.
-
My cholesterol has gone up and is high since going gluten free.
I have also gained weight and haven't been eating as healthy as I was before, so I am sure that plays in to my higher cholesterol some.
Have you had your Vitamin D level tested? I have been reading up on Vtiamin D deficiency and found that it's connected to high cholesterol. My husband has a family history of high cholesterol, like it sounds like you do, and he has been able to lower his cholesterol substantially by remove animal fats from his diet, but it is still considered high.
I'm sorry to hear you aren't able to eat normally again. It sounds like you were doing very well on the steroid and it must be so upsetting to have that taken away. Are you thinking about trying another doctor? I would seriously consider it if I were in your shoes.
-
I was told that I needed to eat the equivalent of two slices of bread a day. I have never heard that it has to be bread. As far as I know, gluten is gluten, so eat lots of the good stuff! You could always eat two slices of bread plus the yummy gluten filled foods.
I would really question and research what your new doctor is telling you about your previous results before you go through with the new blood test and endoscopy/biopsy. It has only been a little over a year, so you should be able to get a copy of your endoscopy report and biopsy report from the lab and your first GI doc to see what it says for yourself. Did you go for a second opinion because all of your symptoms didn't completely go away? If so, there are a lot of people who still have some symptoms after a year.
-
I would love to know what he recommends for the ferritin. And do keep us posted on your other thyroid stuff.
Do PPIs keep you from absorbing nutrients? That stinks. I was on one for 6 weeks while treating h.Pylori. I was scared to come off because I kept hearing about a rebound effect. That didn't happen to me...but it is apparently fairly common. I do remember reading about weaning off. I was taking it twice a day. So weaning would have been 1 a day for a week and then 1 every other day etc. Not sure if that would work for you. Or maybe there are different dosages and you could step down slowly. Anyway...I hope this works for you.
I really do feel your frustration. Know that you are not alone! If you ever need to vent/chat, feel free to PM me.
Hi icelandgirl,
I heard back from both of the doctors nurses following up on the low Ferritin. My regular doc said to keep supplementing, but when I asked his nurse if he said how much I should take, she said he didn't and to just do whatever I can to boost it up.
My gastro doctor threw me for a loop and wants to do a follow up endoscopy and biopsy to see if they can find out why I'm not absorbing nutrients better yet. I'm not sure if he is thinking it could be refractory sprue or what, but I think it's still too early in the healing process to be worried about that, so I am going to put that off for a while longer. When I called in I had asked the nurse to ask the doc what I should be taking to raise my Ferritn at this point, but when she called me back she said there was nothing about it in his notes and to keep taking a supplement. She did say that they typically see a very slow improvement of Ferritin in Celiac patients.
Sorry I don't have better suggestions from either if them to share with you to increase your Ferritin.
I guess this is the downside of trying to bypass another appointment and do things over the phone. The info gets passed back and forth between the nurse and the doctor and the original question didn't get answered
-
Wow! The drug info on PubMed specifically says your PPI interferes with many drugs including the absorption of iron! No wonder your ferritin levels have not improved!
Yes! That is what I was thinking too. I don't know why the nurse at my GI's office said it's not likely the cause. Everything I have read says it very well could be.
Could you tell me where I can find the PubMed info you referenced. I would love to read it.
Thanks
-
I would love to know what he recommends for the ferritin. And do keep us posted on your other thyroid stuff.
Do PPIs keep you from absorbing nutrients? That stinks. I was on one for 6 weeks while treating h.Pylori. I was scared to come off because I kept hearing about a rebound effect. That didn't happen to me...but it is apparently fairly common. I do remember reading about weaning off. I was taking it twice a day. So weaning would have been 1 a day for a week and then 1 every other day etc. Not sure if that would work for you. Or maybe there are different dosages and you could step down slowly. Anyway...I hope this works for you.
I really do feel your frustration. Know that you are not alone! If you ever need to vent/chat, feel free to PM me.
Hi icelandgirl,
I have calls in to both of the doctors to find out what I should take for my low Ferritin and will come back and let you know what they say as soon as I hear back from them.
Yep, I have read a lot of info saying that long term use of PPI's can stop you from absorbing nutrients. I think it has something to do with there not being enough acid in the stomach to break food down, so nutrients can't be absorbed. My GI docs nurse tried to tell me today that it's very rare for that to happen and that the doctor thinks my Ferritin is down because I must be eating gluten. This obviously made me very upset, since I am obsessed about being gluten free and protecting myself from hidden gluten sources. I am one of us celiacs who never even eats out because I won't risk the chance of cross-contamination. I put in a request to have my celiac panel tested just in case something is going on, but mostly because I want to prove him wrong. I wish he would have run the celiac panel first before accusing me of sneaking gluten. I would never ever sneak gluten.
I will try your tips for weaning off PPI's. I have been on them for so long now that I know it's going to be tough, but I know it is something I have to do to improve my overall health.
Thanks so much for the very sweet offer to PM you if I ever need to
-
Hi cyclinglady - It is so great that you were able to get you nutritional deficiencies corrected so quickly and were able to stop supplementing! I am going to work hard extra hard now to get my numbers up through supplements and food. I have had my B-12 tested and i was pleasantly surprised it was pretty high at around 700. I last had my Celiac panel ran about 10 months ago and everything looked great, I'm due for another in a couple of months. My husband does eat gluten, but his gluten prep area is on the far corner counter of the kitchen and everything is segregated as recommended for a safe shared kitchen. We are very careful about it and no kisses are given until he brushes his teeth and rinses very well
icelandgirl - It is pretty discouraging! My regular doctor told me to take 5000iu Vitamin D3 for two months, then have my levels re-tested to see where to go from there. My gastro doctor was the one who ordered the Ferritin and he hadn't had a chance to review my results yet when I called for them, so I don't know what he will want me to take. I can come back and let you know when I find out because I know you are in the low Ferritin club and might be curious to know what is recommended. I am still going to push for the additional thyroid test because I do want to know that there isn't anything else going on there. Sorry to hear you are frustrated too!
I know this topic started off heading in one direction and is ending up in a completely different direction, so thank you to everyone for helping me sort all of this out!
I have been racking my brain trying to figure out why my levels dropped, and have been researching like crazy today and I think I realized what the problem likely is. I am taking Nexium everyday and have been for the past 5 years. I know, I know...it's bad stuff. Pre-diagnosis I woke up one day with what felt like a flame torch blowing up my throat. It was so bad and painful that I couldn't function, so I was prescribed a Proton Pump Inhibitor. There was some visible tissue irritation in my esophagus when I was scoped so my GI doc told me to keep taking them to avoid Barrett's Esophagus. I have tried to get off them a handful of times and the burning and pain comes back. I take the lowest dose possibly, but it is very likely enough to keep me from absorbing nutrients. I'm going to try to wean off of them again and look for some natural alternatives to help along the way.
-
Hi Everyone, I'm back with my test results already! I was very surprised to get a call so soon with the results.
My TSH came back at 1.98 and my Free T4 at 0.82 . She said both of those numbers looked good. I didn't ask for the detailed Thyroid test when I was talking to her, because I wanted to check with my gastro doctor for the results of the follow-up test I had drawn yesterday that he had requested first. I wanted to check back and see what you all thought about those numbers too.
Well, the test my gastro doctor had requested didn't come back so great. My Ferritin is back down to 10 (the highest it has been since my diagnosis was 12) and my Vitamin D is back down to 18 (21 is the highest it has been since diagnosis). I honestly haven't been supplementing like I apparently should be, mostly because my stomach feels so much better when I don't take supplements. I also thought since I was this far along, being diagnosed almost 17 months ago, that I would be able to absorb nutrients now and bring my numbers up naturally. I can't believe I caused my own set back by not supplementing!!!
My doc said both my Ferritin and Vitamin D need to be in the 50-60 range before my fatigue, sluggishness, pain, muscle aches, etc. will subside. Now I'm wondering if I am barking up the wrong tree by looking in to Hashi's, when most of my symptoms could be caused by my low Ferritin and Vitamin D levels. The symptoms for Hashi's vs. low Ferritin with Vitamin D deficiency seem to be very similar.
Thanks for letting me go on about this
I look forward to hearing your thoughts.
-
Gee, you already have one AI disorder. Think they would be more helpful in identifying another! But it is ALL about the money!
Yes! That would be nice if they were more helpful. He did admit to me a few times that he doesn't know a whole lot about Celiac and a couple of things he said led me to believe this is very true.
-
Did he even touch your neck? My doc caught my thyroid enlargement and nodules and ordered the complete panel. But that was 20 years ago, when insurance paid without question.
Hi cyclinglady,
He did put his fingers over the area of my thyroid and had me swallow twice. It just took a few seconds for him to do that and he said it felt fine. Is that the same type of thing your doctor did when he examined your neck?
-
Thank so much for the replies!
Icelandgirl - That's a great idea to call them to see if they can add to the testing, but the lab closed at 4pm and it's almost 6pm here now. They move things through pretty fast, so I think it's too late for that now. I'm bummed that I gave in like that. It happened so fast that I wasn't even aware of it at the time. Thanks for sharing you experience and your mom's too. It's very helpful info and I alway like to learn from others experiences. I'm glad you are seeing improvement with your new meds. That is great news!
Gemini - Thanks for explaining the numbers to me. I will be back to let you guys know the results and see what you think of them. I am definitely more assertive over the phone, so I shouldn't have a problem calling and insisting on the additional test once the initial test results are in. I don't understand the insurance companies at all, but I told my husband what happened today and he said I should have just told the doc to order the test and I would pay for it out of pocket if need be. Ugh! I didn't even think about that option. Not that I want to pay out of pocket, but I would be willing to do it if I had too in order to make my body feel better. My digestive system has improved so much and I am beyond thankful for that, but my body feels so tired, sore and achey most days. I'm ready to see improvement in that area now and just looking for a possible answer.
-
Hi Everyone!
I was able to get an appointment with my doctor right away and saw him this afternoon. Well, I pretty much caved in and went along with what he wanted to do. I didn't even realized it had happened until I got in my car and was driving away.
At first he said he would run all of those test, then as we were taking he said that my insurance wouldn't cover them all at this time because he hadn't run the preliminary test first, which are TSH and Free T4. He wanted to run those two first to see if the came back out of range before running the more detailed test.
It made sense at the time, but now I am wondering if those two test are enough to indicate Hashimoto's or another thyroid issue, so that the more detailed test could be ordered if need be? He did pull up my last TSH results, which were 2.5 and said that looked ok, but he likes to see it around 1. That left me wondering if 2.5 is really ok, since it's not 1? I'm a little confused right so any input would be super helpful.
I did have my blood drawn after my appointment and should have the TSH and Free T4 results in a few days. The doc said he has a feeling they will come back fine, but that it would be good for me to know for sure...
Thanks in advance!
-
Oh my goodness the setbacks can be hard! For me, the emotional part is the worst. But I'm an emotional person so it is to be expected.
How did you figure out your egg intolerance?
I'm taking ferrous gluconate on the suggestion of another celiac friend. It's supposed to be easy on the GI system and so far have had no issues. I did put in a request to have my iron stuff all checked when I get my thyroid done. I definitely don't want to overdo it, but I knew that a ferritin of 15 with a range of 15-150 wasn't great no matter what my Dr said so I took matters into my own hands. I'm tired of being exhausted!
Hopefully you will be able to get your Ferritin up quickly supplementing. 15 is really low. That normal range of 15-150 is too wide and is just terrible.
It took me a while to figure out my egg intolerance because the symptoms would last about 5 days. I was eating them every few days for a meal so I was having a continuous overlap of symptoms. I ran out of eggs and didn't have any for a week, then forgot to pick them up at the store, so I had gone without for a couple of weeks and was feeling pretty good. When I started eating them again I had terrible indigestion, heartburn, bloating and a constant lump in my throat. I did an elimination and introduction a couple times and the same thing happened again. It was kind of crazy that I didn't realize it before, but my digestive system is so much more happy without eggs.
-
Wow! I'm surprised to see so many doctors have graduated from The Bad Doctor School.
While it's comforting to know you all understand what I went through, it is very unfortunate that it is so common and has caused needless suffering. I'm going give that doctor heck until he agrees to run these test! Doctors are service professionals who should be working for us after all. It's just so hard for me to remember that when they walk through that door.
-
Hi havanesemom and thanks for your nice response!
Don't get me wrong...I feel much better than I did...but it has in no way been that quick fix my Dr suggested it would be. I'm hoping to continue improving with time. The Hashimotos has set me back for sure. My thyroid functioning has gotten worse in the past few months and the thyroid affects everything! I started a new medication a couple of weeks ago and I have hope that it will help.
Interesting you say that about the ferritin. My Dr said it looked fine. Because it's in the box I'm guessing. I'm supplementing anyway and will recheck blood at the end of the month. If you don't mind my asking...what kind of iron and how much did your Dr suggest taking? I'm still working on my D too. It went from 30-33 between July and November. I'll be having that checked at the end of the month too along with thyroid. I will be reporting back with all results. Lol!
I'm glad to hear you have seen improvement!
The setbacks can be tough, physically and mentally. I hope the new medication will make a big difference for you. It is very rewarding to be able to knock down another symptom, although it seems to take a while to get to that point sometimes. I finally had a ah-ha moment and realized I am egg intolerant, and eliminating eggs has made a huge difference for me. I wish I would have figured that out a year ago.
My GI doctor initially wanted me to take either 325mg of iron salt or 65mg of elemental iron 3 times a day because I had moderate iron defienciency anemia. That was way too much for my digestive system to handle. After trying many different types of iron I found that I could only tolerate Iron Bis-Glycinate at 25 mg of elemental iron 3 times a day. I would have to stop taking it completely for a while whenever I had stomach aches. One thing to keep in mind with iron is that if you are supplementing you should probably talk to your doctor about it, so they can help you find the right dose and check your iron levels every few months. If you take too much, you can end up with iron overload which can cause a whole other set of problems. At this point because iron supplements do upset my stomach, I usually only taking 25mg of Iron Bis-Glycinate once a day.
-
Thank you everyone!!!
I will definitely make a list of the test you mentioned and bring it with me to my appointment. I am going to print off the symptom list from WebMD and Mayo to bring with me too so he can see that I have all of the typical symptoms.
I'm a little nervous about asking him to run the test, since my last doctor would get very upset anytime I suggested I might know what was wrong with me. I think I have mentioned before that I had asked him to test me for Celiac a few times in the years leading up to my diagnosis and he would get upset and insist that I don't have it. Well, I did, and I stopped seeing that doctor after seeing him for 15 years the day I was diagnosed by the GI specialist. I am generally an assertive person when I need to be, but that whole experience has made it very hard for me to communicate with doctors. I always have to make a detailed list to bring to appointments and read from because I shut down and can't remember a thing.
My new doctor seems more open to suggestion, so I just have to work up the courage to insist he run these test. I will definitely get a copy of the results and come back to let you know what they say.
Thanks so much!
-
Hi icelandgirl,
I'm sorry to hear your still not feeling well. I remember we came on this forum around the same time. I am still in the recovery process too. I feel much better than when I started, but I still have some stretches of time where I have a set back despite a strict gluten free diet.
One of the first books I read about Celiac Disease said to expect 6 months to 2 years before feeling better, depending on your systems when you are diagnosed. I was feeling pretty rotten by the time I was diagnosed, so I just always assumed I would be one of the people that take a couple of years to feel "normal"
. I can't believe how many people leave their doctors office being told they should feel better quickly on a gluten free diet. That type of misinformation can lead to such disappointment. I also read that is can take up to 5 years for nutritional deficiencies to correct themselves, so that could definitely make a person feel not quite right.I was reading your thread on Hashi's and I think I read your Ferritn tested at 15, which is way too low. If I read that correctly, that could explain some of your symptoms as well. My GI doc told me to expect low ferritin symptom like fatigue and hair loss until my Ferritn level reaches at least 50, but optimally in the 60-70 range. At my last appointment my Ferritin was at 12 and he said to expect it to take at least another year to get to 50, so it's not a quick fix unfortunately. With your number being at 15, it will probably take a while to come up.
I really hope you start to feel better and see improvement soon.
-
Hi Everyone,
I haven't been on the forum in a while and have been moving right along with recovering from most of my symptoms since I was diagnosed in October 2013. I am still experiencing fatigue and am very sluggish, and have some other lingering issues, so I started to do some research and discovered the strong connection between Hashimoto's and Celiac. I was curious, so I looked it up on WebMD and Mayo's site and was surprised to see that I have every single symptom that they list for Hashimoto's.
I would like to schedule an appointment with my GP to be tested and am wondering if there are any specific test that I should ask him to run? I think my thyroid numbers looked alright when they last ran my basic blood work a year or so ago, but I don't know if those numbers would have indicated Hashimoto's. I remember when I was spending a lot of time reading on this forum a while back, that people had mentioned that thyroid issues can be overlooked when only the basic blood work test are ran. I really want to be prepared for my appointment and make sure that my doctor runs the proper test to diagnose Hashimoto's, since he isn't a specialist and I'm not sure how often he comes across it. I am also wondering if I need to see a specialist for a Hashimoto's diagnosis, or is this something a GP can handle?
Thanks in advance!
-
I see I should have expanded on the reason why I wash my produce before eating or slicing it.
It is due to bacteria and dirt like LauraTX mentioned, and added links with info about, not gluten. I forgot that I need to be more specific about these things on this forum, since most topics are gluten related and it could easily be assumed I was talking about gluten.
Bacteria can cause digestive issues and illness as well, so that is why I choose to wash my produce. I understand that everyone doesn't feel it's necessary, but I feel it's necessary for myself.
kenlove - Sugarloaf pineapple arrived and it is amazing!!! It's nothing like the pineapple we usually buy around here. It is so good! I'm going to juice the skin like you suggested too. These babies were pricey, so I'm going to squeeze everything I can out of them :-) .Well worth it for a special occasion.
-
I was following this topic when it started, since I have been wondering about the handling of store cut produce.
Out of curiousity I called Meijer, which is a major super store chain in my area, and found out that they cut the produce on site at each store (not the distribution center) and they have a designated area in the produce department where there are no gluten containing products and it is not near the bakery (no flour dust in the air).
The only thing I wasn't thrilled about is when I asked if they wash the produce before cutting it, she said they do wash the berries, but most of the other produce like melons and pineapple are just cut up without washing the exterior first. That's not something I feel comfortable eating myself, I wash all my produce before eating or slicing it, but my husband has a strong digestive system and couldn't care less about that and loves to eat the store bought pineapple, etc.
Kenlove - Thanks for the pineapple suggestions. My hubs is crazy for pineapple, so I just ordered him some Sugarloaf pineapple for a special birthday treat. It should be here on Wednesday and I can't wait to try it. The Maui Gold site says they carry it at Costco, so I'm hoping to find that locally to try too.
-
Shopko Naturals are the supplements I take. "Contain no sugar, salt, yeast, wheat, gluten, corn, soy, artificial colors or flavors". They are cheap too. Most are $7.99 or less and they frequently have a buy one get one free special. They don't have a multi so I am taking 3,000 mcg of B12, 5,000 mcg of biotin, 4,000 iu of D3, 1,000 mcg of C, 1,000 mg of calcium, 500mg of magnesium, 5 mg of zinc, and I also get my probiotics there - 500 million L. acidophilus LA14, L. bulgaricus 64.
Thank you for sharing this! I am definitely going to look in to these.
-
Hi Bartfull,
That is great news!
This sounds just like me. Before I went gluten free, I had terrible insomnia and bad dreams when I would sleep. I would also often wake up in the middle of the night sweating and gasping for breath with my heart racing. I'm so glad that is over!
Now I sleep like a baby and could easily sleep for 10-12 hours a night. I love it, but my schedule doesn't :-). It's good to know that at some point I might not need so much sleep. Can I ask what supplements and brand you are taking that helped with your deficiencies and energy?I'm always curious to know what is working for others.
Gerd Diet - Not Getting Enough Calories
in Food Intolerance & Leaky Gut
Posted
I too have Gerd and it can be really hard to manage and figuring out your trigger foods is tough.
Are you taking a digestive enzyme? I have found that taking one before every meal helps me digest food more quickly. I like Enzymedica Digest Complete. They might possible make you feel less full and more hungry, since the enzymes will help you digest your food better. Many on this forum also swear by a good probiotic, especially when healing their gut. I'm not currently taking one, but have heard they do wonders for digestion.