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Newbie Here!
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Hi everyone, I just wanted to post a simple intro topic.

I come to this site looking for advice on my rather recently known condition. I'm in my third year of college and was having a great summer until about the middle of August (2 weeks before college starts), which is when my life spiraled downhill fast. I was confined to bed with crippling abdominal pain, nausea, nosebleeds, and extreme exhaustion (I was sleeping 16 or so hours a day). The abdominal pain was so intense that it had me at various doctors getting ultrasounds, a CT scan, I was even in the ER. I was on strong painkillers which only touched the pain. There was a growing list of diagnoses that were being ruled out. Finally, my doctor looked at me and said: "you're constipated, take some Miralax and you're going to be fine".

I was not fine afterwards as the symptoms remained, I had come across celiac disease and gluten intolerance through web searches and said "well, I've got nothing to lose" so I cut out gluten. Within about a week I did a complete turn around of my symptoms. Plus, I felt even better than I did before I got sick. The persistant acne that I fought with everyday, I cursed at because it wouldn't go away not matter what I did, suddenly cleared. The red, bumpy, peeling rash I had on my hands for the last 3 years suddenly turned into baby-soft smooth skin. My brain felt clear. I had boundless energy. The bloating that I had for the past several years, which made me look pregnant and killed my self esteem, started to go away. I no longer felt like I was going to pass out every time I stood up. No more nosebleeds. No more waking up with extreme nausea. Abdominal pain gone as well. It was like a miracle had happened.

According to my doctor, "it [celiac disease/gluten intolerance] does not present itself this way". That combined with starting college, I've never been tested for celiac disease. However, I'm not an idiot and can read what's being put in front of me. I'm going to a different doctor if I go back during break, by the way. That one was just filling in temporarily as mine was on vacation - I just needed to see someone before college started.

Anyways, story over. Now I'm here to find out some ways to cope with the obvious intolerance to gluten. I've also found myself in a tough situation. It seems that xanthan gum causes problems similar to gluten (basically feel like I'm going to pass out when I eat the stuff). I'm also finding re-emerging symptoms (rash, depression, fatigue, cloudy mind, nosebleeds) even though I'm eating "gluten free" foods. So I think I must be intolerant to something in those supposed "gluten free" products. I'll poke around the forums because I definitely have a lot I want to learn. I'm want to learn what other intolerances tag along with gluten (I was actually diagnosed lactose intolerant in 2007, so that's a known one already). I want to learn which tests to get done too, so when I go home on break I might be able to schedule testing.

Okay, I will end this post now. Sorry, this is so long, I always tend to write too much!

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Nope, not too long at all! Welcome. What a beautiful story of figuring it out all on your own! I just want to say that your intolerance to gluten can become more sensitive and what you are experiencing is quite commonly reported here. That feeling wonderful is followed by feeling uggy again. Sometimes it is other intolerances and sometimes it is your body letting you know you have encountered CC, otherwise known as cross-contamination. Traces of gluten are difficult to eliminate but your body will let you know when you don't. Xanthan gum bothers some who are intolerant of corn. It can also just be something you are intolerant to even if you can eat corn. You will learn a lot by reading and your body will tell the rest of the story by trial and error. I'm so happy you didn't have to go to Dr.'s for years with them telling you that this is not how Celiac presents. This is very much how Celiac presents! And you figured it out! I am very happy for you and I hope you can find a way to eat safely at college!

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Kudos to you for removing gluten from your lifestyle! You could try Guar Gum which is not made from corn.. Many of us have allergies to other foods ie: nightshades, soy...

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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