Get email alerts Get E-mail Alerts Sponsor: Sponsor:

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

Overwhelmed...please Help

4 posts in this topic

Hello everyone! :)

My name is Julie and I'm newly diagnosed. I'm sure this is the same thing that

you "old timers" to celiac hear all the time from "newbies," but I need help! Please send a rescue boat...I'm sinking. My rheumotologist/gastro. dr. have diagnosed me with celiac disease and casien (milk/dairy) sensitivity (after testing).

I'm trying so hard to do good with this diagnosis...but it's so easy to be bad! :huh:

I also have refractory epilepsy and lupus. We are all hoping that this latest diagnosis of Celiac will help ease (or lower) the symptoms related to my other health problems.

I've read that you need to make sure your make-up, soap, basically everything is gluten free also. Do you all do this? Gosh, I've researched epilepsy for ten years, but this is like starting from scratch...I forgot how difficult it was!

Thank you so much for your support! -Julie (newly diagnosed, hungry, and soap had oatmeal in it!). :blink::huh:


Share this post

Link to post
Share on other sites

Ads by Google:

Since restricting my diet (gluten, lactose, casien, yeast, corn, soy, peanuts, etc....) most of my joint pain is gone, I now run a fever less than 50% of the time, and all those other problems/issues have really diminshed.

Work on sticking to the diet - it makes such a huge difference, however, it took MONTHS to see some of the results!



Share this post

Link to post
Share on other sites

Julie: See for help with avoiding gluten AND casein. That site lists acceptable and unsafe foods for gluten/casein free diets. Since I must avoid soy and some artificial sweetners (sorbitol/mannitol/xylitol) as well as gluten/casein, I have learned to just read labels, call and/or email food manufacturers to explain mystery terms on their ingredients and use gluten-free/CF lists only as a starting point in my decision to choose a food. I have discovered a large variety of safe foods within those restrictions, so I don't feel deprived at all. :D

I just recently returned from a vacation where I successfully negotiated gluten-free/cf/sf 'safe' meals in 6 different restaurants. Rather than try to explain about celiac disease or food intolerances, I studied their menus and requested entrees with simply grilled meats and steamed vegies. Most restaurants have at least one entree that approximates that or can be prepared without additional (unsafe) sauces or coatings. Then I would explain that I must avoid wheat, dairy and soy and ask that none of those ingredients be used to prepare my entree. Since I was in San Diego, ordering in Mexican restaurants was the easiest ... corn, rice, beans, guacamole, corn tortillas and chips (IF fried in dedicated fryers), meats are all gluten-free/CF. I only had to request they omit the cheese. (I also avoid hot, spicy sauce.)

I know consuming gluten/casein/soy/sorbitol will give me excruciatingly painful symptoms, so PAIN motivates me not to 'cheat'. Besides I would only be cheating myself. I view pain causing ingredients as 'unsafe' and all other foods as 'safe' rather than bad or good foods. If I accidentally consume an unsafe ingredient, I'm not 'bad', just sad that I exposed my poor body to more damage and scared about how long the pain will last this time. :o

Celiac Disease is correlated with many autoimmune diseases, so doing everything you can to avoid gluten/dairy may relieve much of the symptoms associated with epilepsy and lupus. Focus on how much better you will feel without gluten/dairy containing foods, rather than on foods you are giving up. Also focus on the variety of healthy foods you CAN eat. ;)



Share this post

Link to post
Share on other sites

Thank you for the replies and info. I am just trying to adjust. Figure out what is o.k. and what is not...typical stuff you go through with a new diagnosis. I have a hard time eating anyway (in part due to all of the meds. I take)...It would be worth any hassle though if I could FEEL BETTER! :D -So now I am just struggling to understand how to begin. Thanks for your feedback! -Julie


Share this post

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Forum Statistics

    • Total Topics
    • Total Posts
  • Topics

  • Posts

    • I have the same symptoms.  These symptoms have overlapped other issues that I have and have been left untreated for far too long. Now the pain has gotten worst. My GP believes it's my hiatal hernia.  I have pain below my breastbone, pressure pushing up my chest/throat, dizziness and nausea. 
    • Usually I'm using apps to tell me what celiacs have thought about the restaurants in the area and repeatedly eating at a few different places I haven't gotten sick. Now that I think about it, gluten was a definite possibility. I ,however, just got all negative results from all the following tests so I'm guessing I'm doing ok on that front. -Basic metabolic panel -Liver enzyme panel -CBC -Serum IgA -Tissue transglutaminase(tTG), IgA -Tissue transglutaminase(tTG), IgG -Thyroxine(T4), free direct serum -Thyroid stimulating hormone I thought the same thing about positive antibodies and non-celiac sensitivity reading this; l'm seeing his nurse practioner in two weeks so I'm going to take this and basically argue with what he said and see how that goes haha. I'm gonna guess not real well. I'm going to push being tested for other autoimmune diseases in addition.  
    • I was dx with duoedenitis end of August. No mention of a stomach, esophagus or duoendal ulcer. Just a small hernia. Less then 2cm. But I have a LOT of pain right below the breast bone and I jumped when it was recently touched on exam. I can even feel a small bump in the area. I feel so dizzy and unwell, like some kind of bacteria is invading my brain and am very queasy still.  My heart still feels weird too.  Bloodwork normal, a bit low on protein which is unreal because I get a ton of it but it is always is low if I have not eaten. Mildly elevated myeloycytes and basophils. My GI will probably not see me for a week or two, my primary care put me on sucralfate.  As soon as the food hits my digestive system I feel really weird all over, stomach, chest, throat, head. Just feel like I have this horrible thing infecting my body.  Did anyone feel ulcer pain and have it NOT be an ulcer? I suppose one could have developed since August. 
    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member