LookingforAnswers15

Hi all,

a friend of mine is coming to the States and I am hoping to order certain things online (Amazon). Can you please tell me which

1. Sun screens

2. Make up (lipstick, mascara) do you use?

Thank you!

Hi all,

Almost four years ago, I was diagnosed with Celiac. I did everything I could to avoid gluten, never cheated, but last year my tests were horrible, as bad as they were when I first found out I had celiac. I realized that some products were not safe as they claimed to be. So, I stopped eating them and if I was stressed out, I would only buy the most expensive ones from Germany since I thought that they had to fulfill certain standards. Anyhow, soon after I was diagnosed , I noticed that my ring finger, right hand, used to tremble. Now, it still trembles but I feel like my pinky is moving toward the right (maybe it is because of this that i felt that the ring finger was shaking). Also, the pinky on my left hand involuntarily just rises. I have to admit it is very freaky and terrifying. I noticed that when I eat gluten free chocolate or other sweet products, that my hands and even wrists hurt so much. So, since February 15, I have not had any gluten free products. What do you think? 

Hi,  I would recommend to also stop eating out. We can never be sure how the food is prepared unfortunately and also, all of us with celiac disease do not get a pass if we eat something accidentally that has gluten in it. We end up dealing with various symptoms, which are scary and make us worry of other horrible things that could be wrong with us, which also does not help our recovery. I have always been so careful about eating gluten-free, did not eat out, but my test results came back horrific. I am suspecting that some of the gluten-free products were not really gluten-free products although they were declared as such. 

My recommendations: eat bone broth soup, stay away from nightshades, drink lots of fluid, and do an allergy test of other ingredients and dairy (it can help speed up your recovery process). Dairy, eggs, corn, etc., can be a problem for recovering Celiacs but they can hopefully be reintroduced later.

If at all possible, prepare your own meals and stay away even from gluten-free products. 

Hi all,

so I was diagnosed with Celiac (Marsh 3C) in May, 2014 and at that time my Anti-Gliadin IGA was 221. I immediately went on a very strict  gluten-free diet, and the antibodies were going down. By August of 2015, they were 22. Last month, I repeated the test, expecting it to be close to 0. I was shocked to find out that Anti-Gliadin IGA was >200. I am beyond shocked. As some of you know, I was the one who at first kept saying to everyone to stay away from processed gluten-free food. However, as my antibodies were going down, I felt more comfortable eating processed gluten-free food. I never ate anything that was not declared gluten-free, i have my own set of dishes, i buy gluten-free make up and shampoos, etc. I live in a country that is not very educated about celiac disease and I am getting suspicious of some candies and chocolate, which were declared gluten-free but thinking about it now, I would not have been surprised if they were just marked that way because they see that more people are talking about gluten-free food. It seems that over a year of my hard work to get down my antibodies was lost and i am scared of what it has done to my body. 

Since I got the test results, I went back to the old way of eating: only fruits, veggies and meat. I did some allergy test, which showed what food I am reacting to (corn, rice, some fruits and veggies,etc) and I stopped eating all of it except bananas on occasion. I daily eat a bone broth soup, veggies and fruits. In addition, sometimes, i add either fish, chicken or lamb.

Of course, when it rains, it pours... Yesterday I went to hair dresser after a long time, and for the first time ever, I forgot my gluten-free shampoo. I did not remember it until she literally was washing my hair. It has been a crazy week at work and it just slipped my mind. Although the hair dresser did an amazing blowout, as soon as I got home (25-30 mins later), I washed my hair with my gluten-free shampoo and took a shower. I did not eat much last night (just banana, grapefruit, and cherries) and my stomach is a bit swollen this morning. These fruits I eat regularly and have not had this reaction before, so now I worry it could have been caused by shampoo. Could have a hair dye and shampoo caused this?

My test results are:

Anti-Gliadin IGA: > 200 (normal range < than 25)

Tissue Transglut. IgG:0,39, normal range < than 1

Anti-gliadin IgA: 15,30, normal range less < 25

ANA positive, not given the range

IgE - positive >200 

Any advice? Should I worry about refractory celiac disease? I just learned about it online. You would think that someone like me who has tried so hard to figure out what was going on with me would also check what Marsh 3C meant. Not even one doctor mentioned anything about this. From this site, I knew it probably meant a lot of damage as I saw some people had Marsh 3b, but I did not google it. Now looking at it, I see how much more dangerous it is and how it can cause lymphoma.

Would taking the activated charcoal capsules help if I got glutened by hair products? Thank you!

Thank you all!!! I really appreciate your advice. I called the lab and they said I could not drink the tap water because of chlorine. I am looking into getting a distiller. It is also very likely that the vitamin B12 and D are low. I am doing my best to take the vitamins but sometimes I skip them. I need to be better about it. 

I have actually planned on trying the AIP diet. Thank you for explaining about histamine levels. This further motivates me to try. Thank you!

Hi,

I have been trying to get other tests done but it takes forever to get an appointment or get the results. So, I decided to concentrate on things that I can control and I did an allergy test on different types of food/Ingredients. Things that I already suspected (i.e., tomatoes, potatoes, eggplant, all kinds of sugar and sweeteners, all kinds of cheese, etc) came back as the ones I need to either stop for three months or completely stop eating them. However, I was shocked when it also showed that I needed to avoid for three months or forever the following things:

-tap water -  This is a HUGE SURPRISE (did not know even one can be allergic to this. It said that I was not allergic to bottled water and mineral water.

-bananas, mangos, pineapples,lemons, oranges, grapes, pears, avocados, walnuts, almonds,  hazelnuts, mushrooms, pistachio, tuna, blueberries, kiwi, strawberries, watermelon, melons, apples, figs, spinach, dates,etc. - food that I love to eat. However, some of these things I have not had in over three months because they are either seasonal fruits/ veggies or nuts, which I could not find declared gluten-free (e.g. watermelon, dates, melon, blueberries, pistachio, almonds, hazelnuts, figs), so this makes me think that I probably won't be able to eat them since I have not had them already for over three months but still tested high on allergies.

-wine (I assume because of grapes)

-green tea - no clue

-coffee, chocolate, honey - honey was also a shocker. I use it instead of white sugar to sweeten my tea and lemonade

- lentils, rice

DID ANYONE ELSE GOT A TEST SHOWING THEM THAT THEY ARE ALLERGIC TO TAP WATER? I need to find a nutritionist because i feel like that if this test is accurate (I did it in a private lab/clinic), I cannot eat many things. Any recommendations?Thank you!

Hi, it may be difficult for your daughter, but try avoiding even gluten-free processed food as much as possible. It will help her recover faster. While it does not have gluten, it has a lot of other substances/additives, which may not sit well with your daughter while she is recovering. Pay attention how she reacts to dairy products, eggs, nightshades, corn, oats,etc. At first, due to inflammation and damage, she might not be able to eat them. However, once healed, you can start reintroducing one at the time and see how she reacts. No one likes learning that they have celiac disease but try to look at the bright side... it was discovered fairly fast so she has an excellent chance of recovering and not having any further issues on gluten-free diet. Some people go undiagnosed for a very very long time, which just makes their recovery that much more difficult. Make sure she is 100% gluten-free and you both will do great! Good luck!

Hi all,

since the last time I wrote, I got to see a rheumatologist. However, he was not interested in listening to my symptoms but just reading my test results that are already outdated and as you know, some came back as positive. He said that I did not need to come to him since most likely nothing was wrong with me and asked me whether I saw a neurologist. God knows how much I would love that was true. I told him about my foot pain, problems with my ear (the  other doctor said it was tinnitus and also told me to go to see a rheumatologist). He told me to repeat certain tests  ANA, ENA, and also get tested for Lyme disease. I have to admit that I was surprised by this but it does not hurt to check it. 

I decided to eat healthy again. From Feb. until some time in March (all together 40 days), I ate very healthy...smoothies, fresh veggies, fruits and meats and avoided all gluten-free processed food and sweets.  A few days ago I ate some chocolate and some gluten-free processed food and I was so tired. I barely could function after work. I began reading about the importance of eating healthy when one has a chronic illness. Most of those articles mentioned avoiding gluten, sugar, and dairy. So, I decided to cut sugar out for good but i decided to have some gluten-free ice cream and chocolate today before stopping it for good. Tonight, my whole body is itching.

Has anyone had any reactions like these?

Thanks!

Hi all,

I wrote about my foot pain 7-10 days ago. I really have no clue what it was. I thought it could be bunion or gout. I could not walk for about 5 days straight because my left foot was hurting so much. I literally cried from pain. My dr. said that she thought that I might have hit it but I know for sure that I did not. She ordered some tests, including RF and CRP, which came back positive and ASO negative. Can you please tell me what you think of these results? My foot is still hurting but not as much; sometimes I have chills and I am often feeling cold and my hands are mostly cold, my left eye has been hurting a bit on and off for a couple of years but tests always came back ok, and I experience random muscle twitches. My iron level is fine. I follow gluten-free diet because I have celiac disease but I ate some potatoes 2 weeks ago and I do not know if this had a negative effect on me. I have a stressful job so I have been eating more processed gluten-free food and chocolate that I usually did. I stopped again. To make things worse, I have a business trip that I cannot cancel and I am not sure whether I can catch my doctor before my flight. Do I need to see a doctor before I leave? I will be gone for 10 days. Thank you very much.

Dear all,

thank you for your suggestions. I am not feeling any better. It is an excruciating pain. My dr. thinks that I either hit my foot or somehow twisted it. According to her, it is not swollen a lot. However, it is difficult for me to walk. After speaking with my mom, she thought it could be gout. Luckily, my toe has not changed color. In general, I avoid taking painkillers as much as possible but with this kind of pain, it is impossible not to take them. My x-ray came back ok, thanks God. However, my foot began hurting after I had an x-ray. One of my neighbors said that her husband broke his small toe without even realizing it and it was in so much pain as well. It would be crazy if I hurt my foot on my way from x-ray to work :(.

Hi all,

Today, while wearing shoes, which I wear almost every day, normal flats, and never had any problems with them, I started feeling pain on my left side of the foot, around my small toe. Had no idea that this area is also considered a bunion (I learned earlier when I googled foot pain). I took a nap and woke up with excruciating pain and could barely walk. I really do not know what to make out of it. I am icing the foot. I do not know if I would call it ironic or stroke of luck, I was scheduled to have an x-ray of my hands and feet today, which I did and now I am waiting for the results but because of this sudden pain, I have to admit that I am getting worried. Has anyone experienced this type of pain before?

Hi all,

for a long time I was able to stay away from sugar but once I started eating gf chocolate, it has been hard to stop. I am trying to cut all sweets from my diet again. I do not use regular sugar or sweeteners. I prefer using honey because I feel it is a healthier and safer option (worried about contamination in factories).

Hi,

I was wondering if anyone has a similar issue. I have noticed before that a few doctors have said that they have problems inserting needles into my veins. They said that they keep wiggling or they burst once the injection is inserted. Over the weekend, I ended up in the Emergency. I think it had to be celiac because I ate some gluten free food for the first time and I was throwing up so much. I swore that I won't buy anything prepackaged ever again. This was like a flashback to when I was so sick that I ended up in the hospital because of dehydration and I was finally diagnosed with celiac. Now, my hands and arms are filled with wounds because a doctor yesterday and a nurse today could not give me i.v. fluids. Both of them said the same, veins are wiggling, moving, visible but once they insert the needle they move. While we were talking yesterday, the doctor said she had a patient who has lupus and similar thing was happening to her. It goes without saying that I freaked out. Is it possible that this could be related to lupus? Those who know me on this forum from before, know that I have been worried about other AIs because I have had some symptoms that I thought i should not have since I am on a strict diet. I think it is time to start looking at things again. I am so tired of doctors and being scared. That is why I decided to take a break from looking for the answers on my own. I do not think anyone understands what I am going through at home so it makes it harder. 

If you know anything about veins and why this happens, please let me know.

Thank you!

On 11 Oct 2016 at 6:33 AM, cyclinglady said:

No specific advice.  Just.....hugs!  

thanks for always being there for me. I apologize for not responding sooner.

Hi all,

I haven't posted on here in awhile. Unfortunately, I think I got glutened. It makes no sense since I am extremely careful. My whole body aches, muscle twitch, my lower left abdomen was hurting yesterday, and no energy. I bought a gluten free salad dressing but I think that it was not gluten-free although they labeled it as such. I drank some milk (lactose free) and I never had such a bad reaction before. I have not had milk in over a year and recently reintroduced it and it seemed ok. If you look at me, I am able to hide pretty well how miserable I feel. I do not want people from work to know, so I am saying that I might be catching a virus. The problem is that I have a ton of work to do but unfortunately the brain fog and body aches are not helping. Any advice how to get through this week? I drink ginger tea, eat bone broth soups, some fruits and veggies. Thank you!

I also think that the HPV/Gardasil vaccine triggered something in my body. I had some Celiac symptoms many years before this vaccine but I felt ok. I was physically very active. However, after I received the third dose as well, I began having more problems including a more persistant pain, overall body weakness, lack of concentration, hair loss, etc.

Hi, look at your vitamin b levels. You said they were fine but check how high they are. I am also frustrated. I had a few months when I was not losing my hair and now it has started falling out again. I checked my b12 vitamins and while they are in "normal"range they are at the lower end of the range and they are lower now than a few months ago. So, I am hoping it is because of vitamin b. I am also tired. Good luck.

Hi Chris, haven't had a chance to read the whole conversation but regarding dairy, if you are suspicious of something, drop it for some time and see. You are still healing so maybe dairy is bothering you now. Also look at the nightshades, corn, dairy, soy, and eggs. I had a horrible time last year. I had muscle twitches, brain fog, pain, was tired,etc. I searched online and decided to drop all of those things I mentioned above. I am not sure what bothered me since I dropped them all at once but i slowly began feeling better. Now, i reintroduced eggs again and sometimes have lactose free milk with my coffee. I recommend eating salmon, tuna, bone broth soups, using olive oil and coconut oil and not eating much or not at all processed food even if it is marked gluten free.

Hi all,

so, it seems that the doctor wants me to do the following tests: CMV, HSV1 and HSV2. I am not sure what to do. I spent so much money on another test that came back negative. Not sure why Dr. wants me to do these ones. Has anyone done these tests? Could Gardasil injections trigger/cause any of these?  How I feel these days: my right hand just seems so fragile and I have some joint pain. According to the latest MRI, my lymph nodes are still enlarged. My left eye still hurts somewhere deep in there and looks foggy.I still worry about RA and Lupus. Rheumat. factor came back positive in one blood test and negative in the other. I truly don't know what to think or do anymore. Any advice?

Hi all,

So, HLA-B27 came back negative, thank God, but I still need to figure out what is going on. I will see the doctor that ordered this test some time this week. Any suggestions what I should ask him? It seems all my problem areas are on my left side (left eye hurts, enlarged lymph nodes are on the left side of my neck and one in my armpit I think). I also had Rheumatology factor test done last month and in one private lab came back positive while at the hospital it came back negative. Thank you.

Hi guys, I need your advice. This pimple like looking bump is back. i woke up this morning and as I was about to change a shirt, I noticed it. I took a photo of it and realized it is on the exact same place as the one in September. I asked my mom to take a photo of it back then so that is how I know. Should I be worried? What do you recommend?

I think I react to peanut butter as well. I also avoid dairy, eggs, and soy.

Hi, I agree with Kareng. Also, not sure when you were diagnosed but pay attention to how feel when you consume milk products. If you are still in the process of healing, you might be sensitive to milk for now.

Hi again,

After I was diagnosed with celiac and had all these troubles, I learned not to sweat small things in life. I feel sad when I see people worrying about stupid things, which I did myself before. I think that all of us on this forum are so much stronger that we give ourselves credit for. I see people posting on their Facebook that they have a cold and they do not realize how lucky they are that it is just a cold. It is finally a beautiful spring day and I got out of work early to see a private doctor and see what he will tell me. He is supposed to be good. It cost me an arm and a leg but I got tested today for something. He requested HLA-B27. It will take about 3 weeks to get the results. In the meantime, I am doing other tests. So, I got tested for rheuma factor again on Monday (the doctor requested because I did not have an actual number, it just said positive from the private lab)  and apparently came back negative this time. I truly do not know what to think any more and which place to trust. What is this HLA-B27 supposed to reveal? Has anyone done this test? Thanks a lot. Hope you are all doing well or at least starting to feel better.

Thanks Gemini. The doctor ordered some rheum. tests.