HavaneseMom

Hi Icelandgirl,

Another option for dairy, soy, egg free chocolate are these peanut butter cups (if you are eating nuts):

Open Original Shared Link

My health food store has them along with the Enjoy Life chocolate Kareng suggested and they are so yummy, but way overpriced, so I save them for a special treat. I get the bag of Enjoy Life mini chips and eat a few whenever I am craving chocolate and the bag last a long time since they are mini chips.

Edited to add- I see those peanut butter cups have soy lecithin in them. Sorry! They are delicious if you find out soy is not a problem.

Hi Beth,

I am sorry to hear you are having such a rough time. It is so hard to be patient waiting to see improvement when you are trying so hard to do everything right. I'm not sure if this will be helpful, but I saw very little improvement during my first 6 months or so gluten free. I was very frustrated, then one Sunday morning I woke up and the gnawing stomach pain I had every day for the past five years was gone! I have had more improvements recently too. My brain fog and fatigue are finally lifting and I feel present in my life, instead of like a zombie all of the time. I am just getting back to working regular hours at my job too, and I have been gluten free for almost 10 months. You are still very early in the healing process, so try to stay positive and hopeful. Some of us take a while longer than others to feel better. Most of the improvement I have seen was just in the last 4 months.

I love Irish's idea to make a list of symptoms and cross them off as they improve. I wish I would have done that. You will feel encouraged once you get to cross something off of your list. I have read about how great people feel 2 years post diagnosis when symptoms have healed and it has been so encouraging.

Back to the fibro diagnosis - one other thing I try to do for my pain is full body stretching. I really like this set of DVD's:

Open Original Shared Link

Just be careful not to over stretch. I have done that before trying to work out a tight area and end up having a flare up, so I just stretch to a comfortable point and all is fine.

I also have found that if I wear light weight supportive athletic shoes around the house that my pain is better than if I am just wearing socks. I don't like to wear my outdoor shoes in the house, so I have a pair of New Balance shoes I wear inside when I am doing housework and moving around.

I always joke with my husband that these are not things that a 41 year old should have to do, but whatever works :-)

Hi Beth,

I do believe that many of us here have been diagnosed with fibromyalgia. I have been told I have fibromyalgia a handful of times, but I don't accept it as diagnosis for myself and won't take any meds for it. That is just a decision I made for myself, that is right for me though. I feel like it is a diagnosis similar to what many of us have been given for IBS, when we really had Celiac all along.

I do believe that the aches and pains are celiac related for me. I'm not sure how they couldn't be, especially for people who have gone undiagnosed for a very long time like us. Our bodies have had lots and lots of inflammation over the years and need time to recover and heal.

I am about 6 months ahead of you in my recovery process and am starting to have some pain free days here and there. I can't take ibuprofen or anti-inflammatories due to still having a super sensitive gut, so I can't recommend anything in that area. I know I feel much better when I am moving around throughout the day. My days of major pain usually follow a day at the office sitting at my desk in one spot, so I try to keep moving as much as possible. That is really the only thing that helps my pain, to just keep moving around and keep my muscles warm.

I am curious though to know if you are seeing any relief from the meds you were prescribed? Hope you feel better soon.

I have a gluten intolerant friend who just told me about a meal plan website that offers a gluten free plan.

It's Open Original Shared Link . If you go to their website and scroll to the bottom of the main page, on the left side, they are offering a free one week meal plan. They give you a list of 20 ingredients to purchase at the store, and then give you the recipes to make 5 gluten free meals, and you start with the using the most perishable items first. It looks really interesting. I already printed off my free meal plan, but haven't tried the recipes yet. I think it's definitely worth trying out for free though.

I don't touch artificial sweeteners either. Nasty stuff - in my humble opinion. It's hidden in foods you wouldn't expect too, so it can be one more thing to look for when you read labels looking for gluten. There is lots of info on the Internet about artificial sweeteners and the different names it is called to look for on labels. Hope you have a better day tomorrow.

sup guys,

 

thanks for the tips!  It gets me mad cuz I feel alot better off of the enzymes, but what am I going to do with a $20 bottle? ha, I'm sure I can hand it off to one of the parents...

 

Yea, my improvement has been very slow this year, I'm actually will be prepping for a barium CT scan tomorrow so we can get a better idea of the middle.

 

I'll see about maybe trying a smaller dosage in the future when I at least feel stronger

If you wanted to try a lower dose of enzymes, you could always open up one of the capsules you have and sprinkle a little bit, like 1/5 or 1/4 of the capsule contents on to your food, and just close the capsule back to use the rest later. Taking it with food might help it settle a little better too. I can't take anything on a empty stomach, so I was taking mine at the beginning of a meal instead of 15 minutes before like the instructions had said. Hope you feel better soon :-)

Thank you everyone Looking forward to making these! HavaneseMom - yes, here we call french fries chips (and they're big and chunky) and chips are crisps. I love peanut butter and jelly (jam!) but it's not as popular here. Cheese and jam is also popular (it's like a poor man's brie and cranberry haha)

I havent heard of cheese and jam before Katie. It sounds very good though. I'm guessing we would use cream cheese for that type of sandwich here. The little differences in the terms we use and how we all eat are very interesting. I always remember that you are from the UK because you had wrote that you were "chuffed" about your blood test in one of my topics a while back. That wasn't a term I had heard before, so I did a quick internet search and found out it meant you were pleased :-)

When I was a vegetarian and had to pack a lunch, I ate alot of peanut butter and jelly sandwiches, or cheese sandwiches with lettuce & tomato or whatever other veggies sounded good on it that day. I would bring some chips and a fruit or some veggies to eat too. I know it sounds simple, but it was easy to put together and got me through my shift.

Congrats on the new job!

*Edited to add - I just remembered you are in the UK, where your chips are our french fries(here in the US). I believe what we call chips, you call crisp?? Do people even eat peanut butter and jelly sandwiches in the UK?

Hi CajunChic,

I'm glad you came back to follow up. I know we talked about dairy earlier and I just wanted to let you know that I myself have been off of dairy for 10 days in an attempt to try to relieve sinus pain/pressure/headaches. They have all lessened a bit already and I have had a rather annoying buzzing noise in my left ear for years that is now down to whisper. My doctor always told me that buzzing noise was caused by congestion. It's not easy to give up my beloved cheese and dairy, but I just wanted to let you know that I have seen some improvement and hopefully you will too :-) .

Hi samjayde,

I just offered a recommendation for the Grand Rapids area in the other topic you posted in earlier.

My GI doctor is Dr. Steven Crane at Grand River Gastroenterology. He was booked out for a while when I scheduled my initial consultation, so I saw his Nurse Practitioner, Tamra Groothuis for my first appointment. She is the one that suggested I be tested for Celiac which led to my diagnosis. I know of a couple of other people who also see Dr. Crane and Tamra, and are happy with them.

Sorry to hear you have had so many problems.

I live in West Michigan and have found a GI doctor here that I am happy with. If you are interested, his name is Dr. Steven Crane and he is at Grand River Gastoenterology in Grand Rapids. I would also recommend his Nurse Practitioner, Tamra Groothuis. She is the one I saw for my consultation and wanted to test me for Celiac after talking to me for just 15 minutes, this was after I had been searching for a diagnosis for years from my Primary Care doctor. I am grateful everyday that I walked in their door that day.

I'm glad you are feeling better now. Did you get tested for Celiac through blood test and biopsy and all related deficiencies? It is important to do so to get a proper diagnosis before removing gluten from your diet. I couldn't tell from your post if this has been done yet. Sorry if I overlooked that part.

* Edited to add- I just realized I replied to a old topic that someone else had posted a new reply to today. I would still recommend these doctors to anyone living in my area :-)

Hi Ami,

I'm in the low ferritin club too. Mine was a lowly 2 at diagnosis and was only up to 9 at about 7 months post diagnosis. It was still that low even after taking 50 mg of iron bisglycinate daily(I think that's the same type of iron that is in Slow FE), but my CBC numbers are much better now. I was still have a lot of low iron symptoms and talked to my GI doc about it. He told me that a person will still likely have symptoms until their ferritin level reaches 50 - even though my labs normal referrence range starts at 10.

If you are on the low side of the range, that could explain why you are still having symptoms for sure. My doc also said it woulld probably take another year for me to get my ferritin number where it should be, so it seems like this isn't a deficiency that corrects itself very fast. More time and patience I guess :-)

Hi ezgoindude,

I used the Enzymedica Digest Complete before I was diagnosed. It is their low dose version. I had constant stomach pain at that time, and the digestive enzymes really helped me digest my meals better. Now that I am gluten free and feeling better, I can't take them anymore. They really hurt my stomach now. I must not need them anymore and maybe you don't too?

I used to occasionally get zap type shocks that would run from my shoulders up my neck before I went gluten free. I never asked a doctor about it, but thankfully it hasn't happened since I stopped eating gluten. It sound like yours improve when you do eat gluten though??? I'm not sure why that would be happening.

Does it look like the hump in the picture in this link?

Open Original Shared Link

If so, it can be caused by poor posture, weak muscles or scoliosis, all of which can be worsened with the upper body weight gain you mentioned.

Have you looked at findmeglutenfree.com yet?

You can search by your city for places to eat and see how other people who eat gluten free have rated their experiences.

Say - John Mayer

Song Sung Blue - Neil Diamond

I have noticed this in my teeth over the last 5 years or so. I assumed it was part of aging, but I just did a quick online search and a couple of things came up that could apply. Vitamin D deficiency, which lots of us have or had. The other was acid erosion from acidic foods and drinks. I'm going to get some ProNamel Toothpaste and keep taking my Vitamin D!

Thanks us much for this tip sweetsailing!

I'm ordering some today. My muscles have been so achy lately, I assume from the high humidity here, so I'm really looking forward to trying this. I don't like to take anti-inflammatory pills either and ginger has always helped calm my sensitive stomach so this will be a great tea for me to try.

Hi GFAnnie,

As far as potato chips go, they are usually ok, but grab the bag and look at the ingredients before eating them. My first gluten free newbie mistake was with a can of Pringles. I was on the go and grabbed a can at the gas station assuming they would be just potato, oil and salt. I ate about five of them, then looked at the ingredients and was horrified to see wheat starch on the ingredient list. Luckily I didn't get sick from it, but I learned a good lesson to always read the ingredients. Most potato chips are just potato, oil and salt - but Pringles are a no go for us.

Have fun at your BBQ!

Hi CajunChic,

I have sinus pain and pressure too. Have you tried eliminating dairy? I do notice that I have increased pain/pressure when I eat dairy and I recently learned that it is a known offender for causing some people sinus problems. If you call your ENT, they might have a diet they would recommend that you try. It might be worth a phone call to find out what they say and if they think it could work in your case. I think alot of doctors assume that patients aren't willing to try self help approaches, so those options go unmentioned.

Another thing that I have tried and liked was a Neti Pot. If you haven't tried it before, there are some YouTube videos showing how to use it properly. I'm not going to lie, it does feel a little strange at first, but it does temporarily relieve some pressure.

I do think that the exhaustion hangs on for a while for some of us. I'm not sure how long you have been gluten free, but I have been for 8+months now and am still pretty tired most of the time. Hang in there and I hope you feel better soon.

Hi sidelined,

I had Vitamin D, B12 and Iron checked around the time of my diagnosis. My D and Iron came back deficient. Have you had your iron levels tested? I have noticed a lot of people on this forum have had anemia at diagnosis. Low iron or iron definciency anemia could definetely cause shortness of breath and fatigue. I couldn't walk up the stairs at my house without gasping for breathe when it was at its worse. Ask your doctor to have your Ferritin level tested specifically, in addition to the Complete Blood Count if it hasn't been done yet. If you are having a problem with iron, your Ferritin level could show it before your CBC will. I did a quick search and found this link that explains it better:

Open Original Shared Link

Hope you feel better soon. If it is your iron, it might take a little time to correct. I'm still working on mine.

Yes! My 12year old son has been on this for several years due to terrible migraines. We were thankful to find his trigger. He stays away from nitrates which are found in processed meats. That seems to be the main trigger although we watch the caffeine intake also. They make nitrate free lunch meat, bacon, pepperoni and hotdogs so it is not too bad for him. Record what u are eating so that maybe it will be easier to track when u have symptoms. It took several months to clear his body of nitrates after we started the diet as he kept having mini symptoms. He can't function if he doesn't follow the diet.

Hope this is helpful.

Renaye

Thank you so much for replying with this information. It's very helpful and encouraging to hear that this diet helped your son so much. I didn't really want to go on yet another restrictive diet just to see what happens, so it's great to hear that it has worked so well for someone. It's also helpful to know that it took several months for his symptoms to fully resolve, so I won't give up on it if I don't see results right away.

I have been trying to notice if any foods are making my headache worse, and I have noticed that cheese brings on congestion and a more severe headache, so I'm pretty sure that I will see some improvement on this elimination diet. Hopefully it will make a huge difference like it does for your son. I'm glad to hear he found the source of his migraines and he feels so much better now!

Hi Everyone,

I was told by my ENT doc a couple of years ago that I have a constant low grade migraine. My symptoms have been worse than usual lately and my primary care doc sent me home with a handout for a "Migraine Diet". It has me eliminating things like cheese, nuts, nitrates, canned food, etc. I am wondering if anyone has tried it and had success or if there is anything you have tried that has relieved a long term headache? I think I have had it for about 10 years now, possibly longer, but the intensity is definitely getting worse over time.

I wake up every morning with what feels like a major hang over, but I never drink. My head feel like it's full of cement and I have a ton of sinus, head and eye pressure. I'm super sensitive to light and noise too. My stomach can't tolerate pain pills, so I just deal with it the best I can, but I would love for the headache to be gone.

Any tips or suggestions any one who has had headaches like this has I would love to hear. I am fully gluten free, so I'm pretty certain cross contamination is not the issue with this particular problem.

Thanks in advance!