HavaneseMom

Hi Icelandgirl,

One of my favorite places to shop for gluten free food is Trader Joe's. Maybe you have one near you? I have to drive 2 1/2 hours to get there, but we make a fun day trip out of it and stock up on everything since their prices are so reasonable. Their frozen gluten free waffles are really good, and their gluten free Oreos are too. Their gluten free pizza had a little too much garlic for me, but I'm a plain eater. They have a five page list of gluten free products that they carry on their website. It could give you a idea of what types of gluten free foods are out there. (I tried to copy the link to the list here, but it didn't work)

My favorite book so far has been "Celiac Disease: A Hidden Epidemic by Peter H.R. Green M.D.

I am about 3 1/2 month gluten free and still don't feel 100% yet, but am feeling better everyday (most days). I have had excessive hunger like you we're saying you have. It was even worse for a while when I went gluten free. Mine would go away for a few days and then come back with a vengeance. I just started to experience days when I'm not hungry and it is a strange sensation after feeling starved for so long.

In my case, I am just trying to be patient and dealing with the ups and downs, and am hoping I will feel really great by the spring. It just seems like everyone has different symptoms and heals at different rates. A girl I work with was diagnosed with celiac disease and felt great after 2 weeks! Hopefully you will be one of those lucky ones too.

Wow Katie! I'm so glad to hear your numbers are looking so good! Thanks for sharing them.

 

Everyone's advice and input has been soooo helpful.

 

I am going to cancel my appointment with the dietician and save the money I would have spent on that for some gluten free goodies.

 

Nicole/nvsmom, Thanks for mentioning that a weak positive after 6 months to a year might indicate another issue. I will make sure to keep following up on my blood work just in case something else is going on with my body. I am still really tired, gaining too much weight, look puffy a lot and my stomach is not 100% yet, but some of those things could be caused by my lack of exercise too. I stopped exercising a while back when the anemia set in, because I was feeling really light headed and thought I might faint. I am going to start back up slowly and get on the treadmill today. Hopefully by my 6 month check up my number will look even better and I will be feeling great.

Thanks Katie!

 

I am feeling much better about those numbers now. I hope your numbers come back good tomorrow. Maybe you can share your results? I see you have anemia too. I found out that my ferritin is up from a 2 at my diagnosis to a 8 today too, so hopefully yours is improving too.

 

I was thinking about the situations a little bit more. My Gastro doctor is on vacation leave and his Physicians Assistant is covering for him. She is super nice and thorough, but I am wondering if maybe she doesn't realize that it might take a little bit longer for the numbers to drop to normal. You guys have made me feel better about it though.

Thanks kareng!

When the phone nurse was telling me my new numbers, I was really excited and proud that my hard work had paid off.

Then she said I am probably still eating gluten since one of the numbers was still elevated and said they wanted me to see a dietician and have the test run again in about 6 weeks and also have a follow-up appointment with the doctor.

That brought me down really quick. I am glad they are being so thorough though.

I think I will put off the follow-up appointment and blood work so that they fall a few months from now, and hopefully everything will be "normal" like you said. My first couple of months gluten free were really rocky, but I have been seeing steady improvement over the last 6 weeks (yes!!!), so I'm sure those numbers will only get better.

Hi Everyone,

 

I was diagnosed with Celiac through blood test and biopsy and have been gluten free since early October. I have had a somewhat slow recovery, still experiencing some nausea, fatigue and brain fog, so my Gastro doctor just had me re-do the Sprue Serology blood work. All of the number have dropped significantly, but one remains above normal.

 

The phone nurse said that all of my numbers should be below 20 at this point and that I am probably eating some hidden gluten (I am really strict about what I eat so this idea is upsetting to me), but I thought I had read that it takes some time for the blood test numbers to drop in to "normal" range. I was undiagnosed and sick for at least 20 years before finally getting diagnosed with Celiac Disease (my doctor diagnosed everything as stress/anxiety related!). After being sick for so long, should my numbers be below 20 and in the normal range after just 3 1/2 months of being gluten free?

 

Just for reference, here are the original numbers from my diagnosis:

TTG IGA: 157

TTG IGG: 8

Gliadin AB IGA: 170

Gliadin AB IGG: 65

The "normal" range for all of these test would be below 20.

 

Here are the numbers from my blood drawn this past Monday:

TTG IGA: 34

TTG IGG: 4

Gliadin AB IGA: 18

Gliadin AB IGG: 19

The "normal" range for all of these test should also be below 20.

 

 

Hi There, I posted earlier that my excessive hunger went away during my third week gluten free, but unfortunately sine then it came back with a vengeance during my forth week and is still pretty constant. I'm not sure how your DD's appetite is since you posted, but I've looked in to it a bit on this forum and it seems like it can come and go for a while. In one post I read, the person wrote that it lasted for 9 months !

Thanks everyone for all of the great products suggestions and for clearing up to tocopherol issue. I am definitely going to try the products all of your recommended.

So, here is something new that came up regarding my hairspray and I am wondering if anyone knows if this should be a concern. I wrote to make sure it was gluten free because I get a little crazy with the hairspray and it is airborne, so I'm sure I ingest a little bit (yuck). They wrote back with this response:

"Unfortunately, our aerosols cannot be confirmed as gluten free because they contain alcohol for evaporative purposes and the alcohol supplier will not confirm the gluten content."

Is there really a chance of gluten being in the alcohol in my hairspray?

Hi There, Sorry to hear you are having such a rough time. We have some similar issue so I though I would share what I have tried.

I have Hay Fever and sinus allergies and had read in a health magazine that drinking Green Tea can somehow help. I drank a couple of cups of Tazo Zen Green Tea everyday and it really did help after a while. I don't know the science behind it, but it worked for me. I have also heard a lot of good things about local honey helping with allergies. Something about the pollen in the local honey helps you build an immunity to the pollen in the air. I don't think it would be a overnight cure though, but might help after a few months and I also know some people with sensitve stomachs can't drink tea.

I have TMJ too with pain in right eye, neck, jaw and back of head. It's pretty frustrating because there doesn't seem to be much that can be done about it. I even had referred pain in my back teeth and had to have them pulled. I am a little hesitant to say this, but the only thing that actually made the pain go away for me was seeing a really good chiropractor. The chiropractor I saw did the smallest adjustment with his hand behind my ear and after a month or so the pain went away. I moved a few years ago and can't see him anymore and am hesitant to try someone new, so the pain came back. I have been to chiropractors in the past that seriously over adjusted me and caused more harm than good, so I haven't been brave enough to find someone new. There is also a book I bought called "Taking Control of TMJ" that has lots of exercises that you can do if you are interested in trying something like that. I have had this problem for about 10+ years now, and I hate to say it, but I have kind of gotten used to living with the pain and don't think about it too much, even though it is constant.

I have anemia too and did not want to start taking supplements because iron even in a multi vitamin has given me stomach pain in the past. I just started taking Iron Picolinate and I have had zero stomach upset. I am on my fourth day of taking this form of elemental iron and have had no problems. Just keep in mind that the dose that's recommended for "elemental" types of iron is much lower than other types of iron like ferrous sulfate. 325 mg of ferrous sulfate is equivalent to 65 mg of elemental iron. There are so many types of iron available that hopefully you will find one that works for you, just make sure you are taking the right dose because too much iron can be bad too.

Good luck and hope you feel better soon.

Thanks for letting us know they brought it back this year for the holidays. I picked this up at Whole Foods last year before I was diagnosed and didn't even know it was gluten free. It is so delicious! They also make a White Chocolate Peppermint version and I was able to buy both versions at my local grocery store today. Next time I am near a Costco I will buy it there because I'm sure it's a bigger bag and a better deal.

Kareng is correct in that tocopherols pose no threat to a Celiac...no matter how sensitive they are.  It is too highly refined. This is another Celiac myth that won't go away.  Since gluten cannot be absorbed through the skin, the only products you have to be concerned with are lip products and hand creme.  However......from what you have described as symptoms you have, it would appear that you have allergies to boot.  Having those kinds of reactions would indicate that and you may be reacting to any one of the ingredients in the products.I use CeraVe moisturizer because I have Sjogren's Syndrome and have dry skin from it and CeraVe is recommended for Sjogren's patients.  I am also a very sensitive Celiac and have never had a problem with it.  It is gluten free.  

 

If you have no reaction to any particular product, that would be the one to use. If it contains gluten, which would most likely be wheat germ oil, as long as you don't ingest it, it should pose no threat.

That's great to hear that tocopherols are not something I need to worry about. I had read in a few places to make sure that they weren't sourced from wheat, but it sounds like that is just a myth. I'm not sure what ingredient I react to in most products, but am so happy that I can use my products that don't cause a reaction even if they have tocopheryl derived from wheat. Tocopheryl is in so many of my products and I was dreading having to find replacements since my skin and sinuses are so fussy. Thanks for the great news!

I love shopping at the place you mentioned and am a Prime member, but I have ordered lots of gluten free goodies from Vitacost.com . They have a whole gluten free section and their prices are very good. I just checked and it looks like they ship to Canada too. Maybe their shipping rates would be lower? You can always find coupon codes for Vitacost on the different coupon code sites. I don't live in Canada, but got married in Banff, Alberta . Oh Canada.

Hi All,

I am a newbie and am in the process of trying to change all of my skin care and make up products to Gluten free, especially the products that come in contact with my mouth. I have very sensitive skin, sinuses and eyes and it has literally taken me years to find products that I don't have a reaction to. The problem is that those products may contain gluten :-( .

My facial moisturizer is by Kiehl's and contains Tocopherol. They will not tell me if their Tocopherol source is wheat. They did send me this statement which seems like they are saying that it should not be a problem if it did come from wheat, due to the way they process ingredients. I have never heard anything like this before.

"Thank you for your inquiry concerning gluten in Kiehl's Since 1851 products.

Most ingredients derived from grain sources are highly refined and retain no traces of gluten proteins. For less refined ingredients from natural sources, Kiehl's Since 1851 has established strict limits on the level of potentially allergenic proteins. We believe that this policy minimizes the likelihood of reactions to these proteins in the majority of sensitive individuals. However, since individuals exhibit a wide range of sensitivities to these proteins, if you have any questions or concerns you should discuss with your medical care provider."

My facial cleanser is from Earth Science and they have confirmed that their Tocopherol is sourced from wheat, but the product "contains a very small amount, less than 1%".

I have really tried to find replacements and have tried Boscia (burned/stung my skin), Eucerin (swollen eyes, headache), Cerave (watery eyes, runny nose, headache) and my options are limited since I can only use fragrance free products.

So I guess I am wondering, should I be concerned about using the products that work for me and cause me no reaction, even though they do come in contact with my mouth and might contain Gluten?

That's fantastic that your DD is feeling better. I am a newbie too and have been gluten free for 3 1/2 weeks now. My experience was that I was painfully and uncomfortably hungry during my second week gluten free. I just couldn't eat enough to feel full. I even had to get up in the middle of the night and have a bowl of cereal every night just to make the hunger pains go away so I could sleep. Luckily the extreme hunger went away during week three. I still am a little hungrier than usual, but it is so much better than it was week two. Hopefully this phase won't last too long for your DD. Best of luck!

I had iron deficiency anemia.  My last ferritin check came back at 55 (started at 2).  Anemia was how I was diagnosed back at the end of March 2013 for celiac disease  My doc recommended iron taken twice a day.  I took a cautious approach.  I took nothing -- no supplements for a month.  Then I added in the iron taking only one a day with Vit. C at night prior to going to bed and started all the other supplements recommended on this forum for the various deficiencies I had.  That's it.  After another month I haphazardly began taking two (65 mg.) a day.  I'd reduce my dosage if I felt that it was causing constipation.  

 

I'm doing great now.  Back to running after a fractured vertebrae in June doing nothing!  (Get a bone scan!)  My hemoglobin is the best it's ever been (I also have Thalassemia another anemia that does not respond to iron).  I declined several blood transfusions by several doctors.  I decided to be patient.

 

Hopefully, you'll feel more relief in a few weeks and will be able to get off the GERD meds.  

 

Welcome to the board!

 

 

 

Think about slowly adding iron.  You won't absorb all, but at least a little.   Iron is a cheap supplement (esp. at Costco).  Add into your gluten-free diet, iron rich foods (like molasses, I ate it by the spoonful) and cook in cast iron.

Thank you for the great advice cyclinglady!

My anemia was what led to my Celiac diagnosis also. I am more comfortable taking the cautious approach you suggested - and I will try to be patient too. I have been so tired for so long that I want to see instant results, but it sounds like that is not realistic.

I am glad to hear you are doing so great! It is very encouraging. I actually have a Bone Density Scan scheduled for tomorrow. My Vitamin D level came back at 19, so I guess they want to look in to that too. Hopefully all will go well.

I will try the molasses and cast iron too. 

Thanks Again!

Hi Everyone,

 

I am wondering if anyone has had success treating their Celiac related Iron Deficiency Anemia while taking a Proton Pump Inhibitor such as Prilosec or Prevacid?

 

I am currently taking Prevacid for GERD and have been taking various PPI's for about 3 years now. I was just recently diagnosed with Celiac Disease and am hoping that as my body begins to heal that I will be able to stop taking PPI's completely, but I have only been gluten free for a few weeks and still have lots of GERD issues.

 

I also have moderate anemia and my doctor has recommended that I take either 325 mg of iron, or 65 mg of elemental iron, three times a day. Everything I have read says that PPI's reduce stomach acid and inhibit absorption of iron. My doctor kind of blew me off when I asked him about this and said we could test in a few months to see if I am absorbing the iron. I am wondering if iron supplements will even work in correcting the anemia while I am taking the PPI? I would dive right in and start taking them, but when I have taken iron supplements in the past it has made me very nauseous along with constipation. I'm not sure if I should put my body through taking such high doses of iron if it won't be absorbed anyway?

 

If anyone here has any experience with the situation I would so appreciate any advice or suggestions. The fatigue and brain fog the anemia is causing me is pretty extreme and I want to work at correcting it as quickly as possible.

 

For reference my iron blood test numbers are:

Ferritin: 2 , Iron: 11 , Iron Binding Capacity: 466 , Iron Saturation: 2 , Hemoglobin: 9.2 , Hematocrit: 30.7

They are all out of ideal range, but I don't think they are bad enough for IV iron.

 

Thanks in advance!