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Waitingindreams

Member Since 23 Oct 2013
Offline Last Active Nov 21 2014 07:09 PM
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#933810 Energy Levels

Posted by Waitingindreams on 30 October 2014 - 03:30 PM

My energy levels actually seemed to improve a lot once I started a low histamine diet! I've noticed that if I eat a lot of foods that contain higher levels of histamine (I've been eating eggs scrambled with salsa for breakfast daily) I get tired easier. I was officially diagnosed with a sleeping disorder before I was diagnosed with celiac disease - I do not take any medication for it. I also do not take supplements for the histamine intolerance...I just try to keep my levels in check, and I start the day with a Vitamin C and a B-6 (both said to help your body regulate histamine levels) I do not need my anti histamine any more. 

 

Now, I rarely pass out on my boyfriend! I still do - but again, it seems to be because I am increasing my levels of histamine rich foods again. Hey, my diet is strict...I need eggs! But yes, I have noticed a pattern with that. I mean my energy levels were so depleted I fell asleep at work. I was always exhausted, no matter how much sleep I got or what time I got up. Once I feel fully healed, I want to get re-tested to see if I still have a sleeping disorder. 

 

As for corn in your vitamins - GI Pro Health makes a line of vitamins (and probiotics, etc) specifically for the specific carbohydrate diet. Since corn is illegal on this diet, all of their products are free of corn. I take their multi vitamin.

 

http://www.giprohealth.com/

 

What is your new intolerance? I know how that feels. I did a corn free trial for awhile and then reintroduced it, and it seems I tolerate corn just fine. However...I was gluten free, then I had to cut out soy...then dairy...then yeast, now I'm on a strict low histamine grain free diet. What! Lol. And no chocolate! Tomorrow is Halloween! Grr. But we're healing. You were diagnosed a couple of weeks before I was, so it seems we're in the same boat. Hang in there!


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#933576 How Come Gluten Didnt Bother Me In Italy

Posted by Waitingindreams on 27 October 2014 - 04:36 PM

I just wanted to throw my 2 cents in to this topic...

 

I went to the doctor last summer (July 2013) because I just didn't feel good at all. EVERYTHING I ate seemed to go right through me, or give me sharp stomach pains. Sandwiches, minestrone soup, my mom's fried dough, salad, etc. Except for pizza.

 

I found this out the day before my 3rd date with my now boyfriend. I bought minestrone soup and made a grilled cheese. Within 20 minutes I was in the bathroom, very sick. For 12 hours, every 2 hours, I was in the bathroom again. It is the worst I have ever felt. I assumed it was food poisoning. I was up until 6 AM feeling awful. When I woke up, I decided I wasn't going to eat anything at all, to avoid getting sick before my date. We spent the whole day together...we walked to a park near my house and had a really nice time. Then it was time for dinner, and I knew I couldn't just not eat anything all day...so we decided to walk to a pizza place near my house and share a pizza. I didn't get sick. This all happened in late June. 

 

I literally could not stomach anything but pizza. I knew something was wrong and I didn't feel good, but I also knew I had to eat - so I picked up some microwavable pizzas from the store and ate those. No reaction. Finally (July 1st)  I got so sick I knew it was time to go to the doctor. I told him all of my symptoms...about how I always had to run to the bathroom within 20 minutes..how sick I felt, how crampy, the diarrhea, etc. He suggested it was celiac disease. I told him it couldn't be, because I could eat pizza..and I knew pizza had wheat/gluten in it. He said sometimes your body just doesn't react to certain things and sent me for the blood tests. Obviously the results came back positive (and alarmingly high)

 

I live in the US and the wheat flour used in all of the pizzas I bought was not imported from Italy, or non GMO, or anything different- and it still didn't make me sick for whatever reason. Other forms of gluten made me violently ill though, such as bread, soup with noodles, etc. In short, just because you didn't react, it doesn't mean intestinal damage wasn't being done. I had NO idea what I was doing to my body...but just because I realized pizza didn't bother me for some odd reason, doesn't mean I'd include regular pizza as part of my gluten free diet. And in fact, it could have been bothering me in other ways...just no GI symptoms like I was used to.

 

Don't do it! That's my advice... 


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#932732 Is This A Huge Issue?

Posted by Waitingindreams on 15 October 2014 - 08:59 PM

Thank you for your input!

 

My question really was not whether or not a biopsy was important for those newly diagnosed by a blood test, or those trying to get a diagnosis in general. I was diagnosed by a blood test over a year now - and I was just wondering if it was really that big of a deal that I never had a biopsy. My doctor never mentioned anything about it, I didn't even know anything about it until I joined this forum months later. I don't want to do a gluten challenge again, I think it would be ridiculous to. It does say on my records that I have been officially diagnosed with celiac disease. It is really too late for me now to go back and do everything, but I am not debating that others should not do it. I mentioned in the thread that I know someone else in my state that was diagnosed, and he only had to get the blood test too. Maybe my state just accepts blood tests as a complete diagnosis? Once I joined this forum and read about endoscopies and etc, I started getting paranoid that my insides looked like a horror show. I seem to tolerate dairy a lot better when I do eat it, though...so I take it as my villi are healing (I'm lactose intolerant)

 

As for not healing completely with gluten free diet, I'm in the same boat. I felt much better in the first few months, until things settled down. I found I had to omit a lot more foods. Since starting the low histamine diet, I've basically gotten rid of all of my seasonal allergies. And they were severe. I needed to take my Allegra just to function daily. I carry an epi-pen, was prescribed an inhaler, and my doctor wanted me to come in for regular shots as well. It seemed like I was having allergic reactions to everything I ate. Now I barely take my Allegra and I'm fine. It's fall! Normally I would be a mess. And my gut issues have gotten much better since eliminating soy, dairy, legumes, and grains. Phew. Can't wait to reintroduce foods eventually...


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#931841 Histamine Intolerance

Posted by Waitingindreams on 02 October 2014 - 11:01 AM

I believe I have a histamine intolerance as well. My seasonal allergies have always been terrible. I have Oral Allergy Syndrome, and lately other foods have been making me react (itchy throat, tight feeling, etc) so someone on the forum told me about a histamine intolerance.

 

She sent me a link to a chart that indicates the histamine levels in common food. The foods are labeled 0-3. I decided to test it by going on a "low histamine" diet. I ate a plain baked potato (0 histamine level) with just salt/pepper. My throat started to get itchy and tight. I checked the chart - sure enough, black pepper is a level 2 histamine. The next day I tried the potato with no pepper and I was fine. For awhile I had to give up almonds/almond butter (level 1 histamine) but I was recently able to add it back in. I am going to try to slowly reintroduce tomatoes this weekend. My diet mainly consists of grilled chicken and grilled vegetables that are a 0 on the chart (zucchini, broccoli, etc) I use olive oil and celtic sea salt to season them. 

 

I don't know if those supplements work or not. I have not tried any of them. For me, it has been enough to just modify my diet and pay attention to the histamine levels in foods. I also take my regular seasonal allergy medicine (Allegra) occasionally, but i have found that I don't need it to function as I used to in my past. I only need it when my allergies are out of hand, which is getting rare now. Before getting diagnosed with celiac disease, my allergies were so bad that my allergist demanded I go on an inhaler, get frequent allergy shots, AND take my allergy medication. But now I barely need my Allegra. When I was given the skin prick test for pollens/trees/grasses, my arm swelled up so much that multiple people came in to marvel at it and he immediately removed the solution from my arms. I am doing much better now, wow!

 

This has just been my experience. Here is the link to the chart I use for reference, I hope it helps:

 

http://www.histamini...ist_HIT(EN).pdf


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#924342 This Is Extremely Bizarre.. Any Ideas? Help!

Posted by Waitingindreams on 18 July 2014 - 07:55 AM

I see an MD, along with a naturopath. (separate practices) I started seeing the naturopath earlier this year at the recommendation of a close friend, who has been seeing him for years. Since seeing him, I have improved tremendously...I've discovered more food intolerances and I feel a lot healthier in general. For example, I had some GERD issues..my primary care physician (MD) prescribed me prilosec. It made me worse...GAVE me heartburn and stomach aches. We switched to pepcid - same thing. The naturopath discovered my GERD symptoms were caused by a hiatal hernia. My MD gives me OTC medications for stomach issues...(For example: Gas-X for bloating, which actually made my bloating/gas MUCH, much worse..it was awful) whereas the naturopath gives me supplements and digestive enzymes to try. My doctor also pushed me to take a drug called Nuvigil for my hypersomnia...a very expensive, strong drug that is given to people with narcolepsy..and I'd have to be on it every day for the rest of my life. My naturopath is helping me regulate my minerals/vitamins...and in doing so my energy levels have improved tremendously.

 

No, he was actually very concerned! I got a call within 20 minutes asking me to come to his office immediately, I had to rush out of work. He listened to my concerns, asked a bunch of questions, and then gave me the mixture. It was some kind of phosphorous solution...that is apparently used to help ease bleeding gums, etc etc. Whatever it was, it worked almost immediately. I had a sore, raw mouth...tasted blood, and literally had all cuts in my mouth...and by the end of the next day I felt loads better...so there definitely was no placebo effect either. I'm sure it was diluted, but it definitely didn't taste like it was watered down that much, blech. Lol. He did help me though! I haven't had a recurrence of this issue, thankfully. He had no choice but to take me seriously, he could actually see what I was dealing with.

 

I know there is a huge stigma about natural medicine vs. standard medicine...but I am living proof that natural medicine can and does work sometimes. I would definitely never tell anyone to drop their MD in favor of natural medicine - which is why I see both- but I think (providing your insurance covers it - which mine does, at least for this specific office) that it is worth looking into. Personally, I would much rather be put on supplements, vitamins, and enzymes than expensive drugs, if I can help it...but I can understand why people think it's weird or non effective. All I know is I've felt a lot better since switching to more natural treatment methods. I also verify everything he gives me before I take it by researching it and reading reviews, and everything he's given me has a high satisfaction rating. 


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#924148 Most Ridiculous Gluten Comment I've Heard

Posted by Waitingindreams on 17 July 2014 - 09:03 AM

I thought all grains contained something referred to as "gluten", just not the kind of gluten that someone with celiac disease reacts to. Apparently gluten is found in all cereal grains, but only the gluten in wheat, rye, etc makes us sick...so grains like rice, buckwheat, etc are listed as gluten free, since they are safe for us to consume. It seems that the term 'gluten' has two meanings and it can get confusing. I took it to mean that he was staying away from all grains, but who knows! 

 

When I was in NYC with my friends, they all wanted to go to a cupcake shop called Crumbs (which is apparently going out of business now) I happily trudged along with them and pulled out my plain cashews and ate those while they ate their cupcakes. The guy friend we were visiting made a snarky remark and asked me if I was enjoying the nuts. He started to go on and on about how I can have a "little" here and there, it won't hurt or kill me. Every time that I try to explain the disease, it's like he tunes me out. He ASKS me about it, and then doesn't listen when I try to explain. He seems to think it's all a big fad diet and that I'm completely exaggerating, so I've stopped bothering. Would you tell a person with a peanut allergy they can have a couple of peanuts? I know it's not the same exact thing, but still!

 

My mom also doesn't seem to believe in cross contamination, which is INSANELY mind boggling, due to the fact that she has a pork allergy..and if she goes to a restaurant and her eggs are cooked near where bacon is cooked, she will get very sick. It's the same concept, yet she can't wrap her head around it that it's the same way if gluten touches food. 

 

And, Irishheart, funnily enough, about the potatoes - this doesn't have to do with celiac disease, but I am lactose intolerant, and before I was diagnosed with celiac disease one of my guy friends asked me if I could have potatoes. What do people think are in potatoes??  :o


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#915457 Gas-X Causing Severe Bloating?

Posted by Waitingindreams on 08 May 2014 - 07:55 AM

Has anyone had any experience with this? This was awhile ago, but I wanted to share this experience to see if anyone had any insight.

 

Since before being diagnosed, I have had a horribly distended stomach/tons of bloating issues. I am a size 12 in pants, but my stomach (sometimes) looks like I'm 9 months pregnant and at least a size 18+. I gained weight when the celiac disease really started taking a toll...but I have been a size 12 before and my stomach never looked like this. 

 

I started taking digestive enzymes and I've always been taking probiotics...it would make a small difference here or there but nothing too huge. Back in...we'll say February or so...I went to see my doctor to talk to him about the persistent bloating. He told me I should get off the enzymes, and just use Gas-x before a meal to prevent bloating. i figured that was a much cheaper, convenient alternative so I'd try it. I took it before my dinner.

 

After I took it, I had cramping, stomach pain, and tons of gas. I took that as a good sign, i thought it was just my body getting rid of all of the built up gas that was causing me to bloat. Not so much. My stomach changes enough that I can tell when I'm bloated just by looking in the mirror...sometimes it looks relatively flat, other times I look pregnant. So I got up and looked at myself in the mirror...and I was shocked/devastated. I had NEVER seen my stomach look that big before. It was huge, distended and swollen. Needless to say, I didn't touch the Gas-x again. The bloating eventually did go down. 

 

From everything I've read/seen...Gas-X seems to be gluten free. Does anyone know what would have caused this kind of reaction? Even when I bloat after eating I never have that kind of intense pain, gas, or bloating to that degree. I've found the bloating in general has subsided slightly since giving up yeast/lactose..and I am looking into trying Vitalzymes digestive enzymes. 

 

Any ideas? It seems bizarre to me...


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#902737 Bloating - Help? :(

Posted by Waitingindreams on 15 January 2014 - 06:28 AM

Wow, thank you again to everyone for your replies! I have recently been looking into the "Specific Carbohydrates Diet", (it's said to be good for people with any auto immune disorder, ranging from Ulcerative colitis to celiac disease) and I am hoping that helps with all of my symptoms. I cut out soda/all drinks apart from water (mostly) a long time ago, but I have noticed that my candidiasis noticeably flares up after I eat chocolate/sugar. I ordered SCD approved probiotics, digestive enzymes, and a multivitamin, so I really hope this all helps.

 

I think I'm going to look into the other intolerances - might as well. Is there a blood test for corn intolerance? Is there just a standardized test for all food intolerances? I never actually got tested for the lactose intolerance - I just figured it out myself when products with a lot of lactose were upsetting my stomach (milk, icecream, etc) and I found the lactaid pills helped. I did notice the bloating got down after I started taking Culturelle and cut back on rice...so could it be a rice intolerance, or does rice just make everyone bloat? I was eating far more rice products than corn, because I preferred the taste.

 

This is exhausting! 


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#893887 Sleeping Disorders Linked To Celiac Disease?

Posted by Waitingindreams on 30 October 2013 - 03:48 PM

Back in 2009, I started getting fatigued and exhausted very quickly despite my young age (only 22!) I would often fall asleep at the computer, fully dressed, and wake up a few hours later disoriented. Finally in August of 2012 I went and got a sleep study done. I was tested for narcolepsy and sleep apnea.

 

I was diagnosed with a disorder called "Idiopathic Central Nervous System Hypersomnia". It is, apparently, very similar to narcolepsy - except I don't have cataplexy and there was no REM sleep during my multiple naps. The sleep specialist prescribed me a drug called "Nuvigil" that is used to treat narcolepsy. I never took it, since it seemed like a very powerful drug, and it also was very expensive...even with insurance.

 

Nearly a year later, I was diagnosed with celiac disease. Since going gluten free, I would say that I am still exhausted a lot and tired all the time...but to a slightly lesser degree. I personally believe that the sleeping disorder is because of my celiac disease...but it's becoming more of a problem. I often drift off at work (I am an Administrative Assistant, so I do a lot of work at the computer) I asked my primary care physician about the connection between celiac disease and this sleeping disorder, and he brushed it off and told me there wasn't a connection. He said there is nothing he can do for me, apart from me taking the expensive, powerful Nuvigil. I really don't want to take it, but I also can't afford to be falling asleep at my job. I do my best to stay awake, but it's really difficult sometimes. I'm hoping that once my celiac disease is really under control, this sleeping disorder will be a thing of the past. 

 

Does anyone else have a similar experience with a sleeping disorder? What are your tips for staying awake? Will it get better? I really don't want to take this medicine if I can avoid it...


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