• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Frustrated Newbie
0

17 posts in this topic

First, I apologize for the rambling that is about to happen...

I was diagnosed with celiac about a month ago. I do NOT have the classic celiac symptoms. My main compliant was random - but annoying - tingling in my body, mostly at night, but sometimes during the day. It took about a year to diagnose, as I had a lot of tests done (no vitamin deficiencies detected) and multiple months of chaning my thyroid medicine (as they thought that was the problem, which is it not). The only reason they tested for celiac was because I pushed for the test after I tried a few weeks of a gluten-free diet where the tingling disappeared.

I have not had a biopsy to confirm blood tests because two doctors feel that - since I have no gastrointestinal symptoms - the biopsy would be of little value. Ok?!

I am a vegetarian and eat a crazy healthy diet when I have control over my food. I rarely eat processed foods (including bread, bagels, etc.). So, my main source of gluten was pasta and beer (oh beer, how I miss you). So, gluten-free hasn't been too tough for me at home or lunch at work (I pack). But, I travel a ton and eat out a lot (due to my job). I am already the one who makes eating out with the group hard because I don't eat meat (and I live in an area where vegetarian options are not in every restaurant). Anyway... rambling...

My biggest questions concerns are this...

- Now that I have been gluten-free for about a month (minus a slip up or two eating candy with barely malt at a party, which I was only eating because it was all I could eat), I have noticed a few days where I am clearly not digesting all of my food well. I don't understand why this is happening. It is not every day, but enough to be weird. So, what is up with my stomach now?

- So far have had two family dinners where I said I would bring my own food and was totally denied (by my mother and my mother in law). One ended badly with a "good effort" gluten-free pizza, where my family got "confused" and they ended up getting the kids cheese pizza on the gluten-free crust (eww.. cheese pizza is the worst, not to mention how jealous I was of the super veggie no cheese pizza everyone else was eating). The other event my family member "couldn't deal" with my diet restrictions, so we had to go out to eat at their favorite restaurant even though I begged not to go there because I hate it and my kid is not great in restaurants and I actually - shocker - wanted to spend quality time with my family. Plus, my only option was a super tiny salad. And my kid was HORRIBLE when we were there. Anyway (rambling again)... how do I polietely bring my own food to gatherings?

- Why do people keep telling me that once I figure out what I can and can't eat and how much, I will be able to have some gluten again? I have told them "the only treatment is life long gluten-free diet". They look at me like I am crazy and tell me that they have a friend who has celiac but eats regular pasta, etc. I have even got, "So what, it is just some tingling! Have a beer!" My concern is that because I already have osteopenia (at age 35, possibly due to surgical menopause at age 33), so I don't want to screw up my bones. Are some people with celiac actually able to have small amounts of gluten?

anyway.. thanks for any thoughts and reading my rambling....

-U

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Also, I see my address shows up in my profile. I REALLY hope that is priviate. Is it?

0

Share this post


Link to post
Share on other sites

Yes, only you can see that.

0

Share this post


Link to post
Share on other sites

First, I apologize for the rambling that is about to happen...

I was diagnosed with celiac about a month ago. I do NOT have the classic celiac symptoms. My main compliant was random - but annoying - tingling in my body, mostly at night, but sometimes during the day. It took about a year to diagnose, as I had a lot of tests done (no vitamin deficiencies detected) and multiple months of chaning my thyroid medicine (as they thought that was the problem, which is it not). The only reason they tested for celiac was because I pushed for the test after I tried a few weeks of a gluten-free diet where the tingling disappeared.

I have not had a biopsy to confirm blood tests because two doctors feel that - since I have no gastrointestinal symptoms - the biopsy would be of little value. Ok?!

I am a vegetarian and eat a crazy healthy diet when I have control over my food. I rarely eat processed foods (including bread, bagels, etc.). So, my main source of gluten was pasta and beer (oh beer, how I miss you). So, gluten-free hasn't been too tough for me at home or lunch at work (I pack). But, I travel a ton and eat out a lot (due to my job). I am already the one who makes eating out with the group hard because I don't eat meat (and I live in an area where vegetarian options are not in every restaurant). Anyway... rambling...

My biggest questions concerns are this...

- Now that I have been gluten-free for about a month (minus a slip up or two eating candy with barely malt at a party, which I was only eating because it was all I could eat), I have noticed a few days where I am clearly not digesting all of my food well. I don't understand why this is happening. It is not every day, but enough to be weird. So, what is up with my stomach now?

- So far have had two family dinners where I said I would bring my own food and was totally denied (by my mother and my mother in law). One ended badly with a "good effort" gluten-free pizza, where my family got "confused" and they ended up getting the kids cheese pizza on the gluten-free crust (eww.. cheese pizza is the worst, not to mention how jealous I was of the super veggie no cheese pizza everyone else was eating). The other event my family member "couldn't deal" with my diet restrictions, so we had to go out to eat at their favorite restaurant even though I begged not to go there because I hate it and my kid is not great in restaurants and I actually - shocker - wanted to spend quality time with my family. Plus, my only option was a super tiny salad. And my kid was HORRIBLE when we were there. Anyway (rambling again)... how do I polietely bring my own food to gatherings?

- Why do people keep telling me that once I figure out what I can and can't eat and how much, I will be able to have some gluten again? I have told them "the only treatment is life long gluten-free diet". They look at me like I am crazy and tell me that they have a friend who has celiac but eats regular pasta, etc. I have even got, "So what, it is just some tingling! Have a beer!" My concern is that because I already have osteopenia (at age 35, possibly due to surgical menopause at age 33), so I don't want to screw up my bones. Are some people with celiac actually able to have small amounts of gluten?

anyway.. thanks for any thoughts and reading my rambling....

-U

I'm so sorry you're having such a hard time. It doesn't help when your family takes something that's so life changing for you as "no big deal".

As far as bringing your own food, I'm afraid I'm no help there. Since being DXed nobody asks me over..and I don't go out much. There are a lot of people here with experience with that, so I hope they chime in?

A "little bit" of gluten is not OK. It's something you can never have again. If somone you know knows someone who's Celiac and does eat pasta, or whatever..either they are eating gluten-free pasta and since it looks the same as gluten-free, they are assuming? OR maybe their friend isn't Celiac, but is just avoiding gluten? OR their friend is very mis-guided in their diet and it will come back to bite them later? You will have to stand your ground on the NO gluten part of your life. Just a little gluten will activate your system and do damage.

A lot of us find that we need to take digestive enzymes to help break down foods. It's unfortunate that you didn't get a scope to see if there is villi damage. One can have it without the obvious digestive symptoms.

0

Share this post


Link to post
Share on other sites

Thanks! Anyone else with suggestions on bring food to family dinners?

0

Share this post


Link to post
Share on other sites
Ads by Google:


Thanks! Anyone else with suggestions on bring food to family dinners?

Yes. Just pack your food and take it.

Make a gluten-free dish to share, or not if it isn't that kind of meal.

But you don't want to turn your back on family, and you don't want to get sick.

So take your own food and let them learn to get over it.

0

Share this post


Link to post
Share on other sites

Yes. Just pack your food and take it.

Make a gluten-free dish to share, or not if it isn't that kind of meal.

But you don't want to turn your back on family, and you don't want to get sick.

So take your own food and let them learn to get over it.

It is more about not hurting the feelings of the people who want to feed me but fail miserably.

0

Share this post


Link to post
Share on other sites




It is more about not hurting the feelings of the people who want to feed me but fail miserably.

The kindest thing to do is to not put them through the effort.

You don't have to be rude, but the bottom line is that 95% of the time they will not prepare a safe meal or dish.

This is one of the hardest things to do as a Celiac. Every family is different - there are no rules about how to do it.

If they want to try perhaps a gluten-free cookbook or book about Celiac disease would be helpful as a gift??

In the end I think you just have to be polite but firm. And don't starve yourself in an effort to not offend.

0

Share this post


Link to post
Share on other sites

A lot of peoples families react this way at first. They make you feel guilty for not eating their food even though there's no way for them to make food safe for you. Repetition and perseverance are the answer. If someone says to you that their feelings are hurt by your not eating their food, respond that your feelings are hurt by them trying to poison you. If they want you to be happy and healthy, they will have to put up with you bringing your own food. Period.

I would also advise you that the early osteopenia is very possibly a result of Celiac. It is a common symptom and that's how many people are diagnosed.

Any doctor that tells you a scope is no use because you don't have digestive symptoms is uneducated. To me, the blood test is proof enough, but they should have done the scope anyway. Celiac has the same effect on your immune system, your digestive system, and your risk for cancer down the road regardless of what set of symptoms you present with.

And no, you can't ever have 'a little gluten'. Remember, when people tell you that, that they have no education on this subject. It would be like getting on a plane with a truck driver in the pilot seat. Scary, right? Don't ask a stockbroker for information on a space shuttle. Make sure you're getting your info from poeple who know what they're talking about. Like us!

1

Share this post


Link to post
Share on other sites

It is more about not hurting the feelings of the people who want to feed me but fail miserably.

Yep, this is a tricky subject. I have offered to bring something to every family gathering so that I will at least have SOMETHING to eat. I have also started inviting family over to my house where I do the cooking. It gives me a chance to show off my new culinary skills and spend time with family at the same time. If all else fails, your family will just have to get over it and you bring your own safe food. Period. Hurt feelings are much less harmful in the long run than a damaged nervous system, intestinal cancer, and/or other autoimmune diseases that can happen when you continue to consume gluten!!

It's interesting to hear from another person with celiac who suffered from tingling as their main symptom. I had a patch on my back that would tingle relentlessly before I went gluten-free. It totally disappeared after I stopped eating gluten. I accidentally ate gluten at a cookout this past weekend ( bratwurst was a beer brat...ugh), and the first symptom I had before the GI stuff hit me was the tingling in my back!

0

Share this post


Link to post
Share on other sites




Good luck! I too am a newbie and trying to figure all this out. It's not an easy thing and it's a hard concept for others to grasp. Just try to educate them the best you can.

0

Share this post


Link to post
Share on other sites

I have a very simple reply when people make an uneducated remark about how a little is ok, or how "so and So is Celiac and they can eat a little bit. I say sweetly, "Well, I would rather not end up having to poop in a bag when they cut my intestines out, but they might be ok with it..." Poop in a bag is generally an excellent conversation stopper. ;)

0

Share this post


Link to post
Share on other sites

And in addition- no, a little is NEVER ok. Never, ever, ever. Ever. You may just have tingling NOW. But if you continue to assault your body with something it views as poison, your immune system WILL respond in increasingly damaging, possibly permanent, and even life threatening ways. Be firm, be matter of fact, and don't let someone who knows next to NOTHING (including some doctors!) convince you differently!

0

Share this post


Link to post
Share on other sites

Thank you everyone who responded! I appreciate your thoughts!! (even though it took me a week to respond.)

It's interesting to hear from another person with celiac who suffered from tingling as their main symptom. I had a patch on my back that would tingle relentlessly before I went gluten-free. It totally disappeared after I stopped eating gluten. I accidentally ate gluten at a cookout this past weekend ( bratwurst was a beer brat...ugh), and the first symptom I had before the GI stuff hit me was the tingling in my back!

I haven't heard of anyone else with this symptom either. I have had 4 doctors trying to figure out what my problem was with the tingling. I have appointments with 2 of them next month (for other reasons) and I am pretty sure they won't believe it!

0

Share this post


Link to post
Share on other sites

I would also advise you that the early osteopenia is very possibly a result of Celiac. It is a common symptom and that's how many people are diagnosed.

I guess I really think it is due to surgical menopause because I had a "normal to good" bone density before my oophorectomy (at age 32) and 2 years later had osteopenia. I didn't have my celiac symptoms those 2 years. But, who knows.

I wonder if my bone density will get better and/or stop getting worse now that I quit gluten.

0

Share this post


Link to post
Share on other sites

Thank you everyone who responded! I appreciate your thoughts!! (even though it took me a week to respond.)

I haven't heard of anyone else with this symptom either. I have had 4 doctors trying to figure out what my problem was with the tingling. I have appointments with 2 of them next month (for other reasons) and I am pretty sure they won't believe it!

In addition to gi symptoms, I've also had the tingling symptoms on and off for over 30 years, and I'm ONLY 50 (just recently turned 50). lol Anyway, I was told many things like: "You just have a nervous stomach." "You've obviously just cut the circulation off in your..." Back???? "You just ate something bad!!" etc.

Isn't it interesting that when dr's (and I'm sure teachers, which is what I am) get so defensive when challenged with problems we can't fix????

0

Share this post


Link to post
Share on other sites

Thanks! Anyone else with suggestions on bring food to family dinners?

I have a twin brother, with our b-day in January. He wanted pizza for dinner, and obviously that wasn't going to work for me. So I told them I'd bring my own food, but I didn't feel like attempting to bring my own gluten-free version of pizza, especially with trying to warm it up when I got there, etc. So I brought some Asian rice noodles with a yummy spaghetti sauce and chicken. All I had to do was warm it up in the microwave. And for b-day cake, my SIL made a Hodgson Mill gluten-free yellow cake with chocolate frosting. It worked out pretty well.

0

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
0

  • Forum Statistics

    • Total Topics
      107,311
    • Total Posts
      935,416
  • Member Statistics

    • Total Members
      64,970
    • Most Online
      3,093

    Newest Member
    Kathy Moore
    Joined
  • Popular Now

  • Topics

  • Posts

    • My RA blood test was negative and my dsDNA was negative too.  I think that the dsDNA is the lupus test.  I think.  I haven't been referred to a rheumatologist.   
    • Some people will always test negative on the blood test, odd and rare but it happens. You also have to be eating gluten on a daily basis for the antibodies to show up for it in the test for at least 12 weeks. You can follow up with a endoscope and biopsy, if your having gut issues this might be a great idea to rule out other issues. I might also suggest a colonoscopy to rule out Ulcerative Colitis or other digestive issues there. Other thoughts you could have SIBO or NCGS. NCGS  can not be diagnosed...heck I was writing up a bit of a summary page for someone else about it might as well make use of the partially filled out notepad here.  Forgive any typos or misinformation still working it out for various sources. " 1. Acne, Flushed Skin, or Rashes
      Non-Celiac Gluten Sensitivity can manifest itself as a chronic skin condition such as a rash, acne, or red/flushedcheeks, but these conditions could also be hormonal. On the other hand Celiac disease also has Dermatitis herpetiformic or DH, which is characterized by rashes and chronically itchy, elbows, knees, buttons, and back. 2. Distended Stomach or Bloating
      A distended or bloated stomach applies especially after gluten consumption and is a fairly clear sign of gluten sensitivity. A distended stomach is also characteristic of malnutrition as well of celiac disease. 3. Diarrhea, Gas, or Constipation
      These three  symptoms can simultaneously occur after eating gluten and may be a sign of intolerance because,especially the former, is a way for the body to expel harmful allergens or other substances. Often, diarrhea(frequent loose or liquid stools) occurs with gas, resulting in a “feeling of a full or tight abdomen” as put by the NFCA. Constipation, essentially the antithesis of diarrhea, is also a symptom of non-celiac gluten sensitivity and is characterized by infrequent, hard, painful bowel movements from lack of physical activity or poor diet,namely a diet high in refined carbs rich in gluten. This can be made worse if one has a magnesium deficiency, does not get though hard fiber, or drink enough water. All of which can be made worse by the feeling of bloat/gas making one feel too full to need to drink or eat high fiber foods. 4. Brain Fog or Migraines
      Brain fog is a major characteristic of non-celiac gluten sensitivity. Chronic or debilitating migraines goes hand in hand with the idea of brain fog and results in depression or irritability. These again can be made worse by deficiencies, like B-vitamins. 5. Joint Pain or Numbness in Extremities
      Tingling, pain, or numbness in the joints or extremities is abnormal and should be a clear sign of a health problem like gluten intolerance or celiac disease. Colloquially, this tingling is described as “pins and needles” or a limbbeing “asleep.” If this happens frequently for no apparent reason, it could be a sign of gluten intolerance. Again these can help be alleviated and be made worse by deficiencies in Magnesium, B-vitamins
      Total elimination of the gluten protein for an extended period of time, say two weeks or a month, is the only true way to identify if these symptoms are linked to gluten intolerance, and even then, it would not be certain. If the protein is eliminated and any of the above symptoms dissipate, then it should be noted that gluten intolerance may be an issue, but be sure to consult a professional for solid proof."  
    • I have a friend who reacts to raw oranges, apples, and bananas. Funny thing is they are fine with cooked foods using them and pasturized orange juice. Some odd food allergy that gets broken down with heat. SIDE NOTE. I just reintroduced iceberg lettuce, and romaine after not having any in 4 months......I HAVE A NEW INTOLERANCE. even just plain iceberg organic, pieces from the core without chemicals make me horrible sick and vomiting....they used to be fine....WTF?! Oh well spinach is fine and the canned stuff is cheaper and more nutrient dense....but really WTF?! Yeah I tried 2 brands and even the organic one.
    • I had to research today from last night's reaction. Never thought oj would be  a problem. I see from past posts some have had concerns about orange juice . I've joined the club. Myself and DS are reacting to something in pure premium. Just wanted to share info I found in case one day someone else has this experience. While I can't say it is gluten cc we also are corn and milk free, just know we are having a reaction and we just opened a new pure premium that we both drank from. It is possible I'm sensitive to chemicals the flavors / scent added after processing possible culprit. Sad as oj has the vitamin c good for immune system. Which is disheartening if DS is as sensitive as mom didn't appear to be until now. I'm not sure but felt the need to put this out there for those concerned with labeling and who are sensitive. http://www.huffingtonpost.com/2011/07/29/100-percent-orange-juice-artificial_n_913395.html http://gizmodo.com/5825909/orange-juice-is-artificially-flavored-to-taste-like-oranges     Edit: one more link http://www.foodrenegade.com/secret-ingredient-your-orange-juice/ Maybe today is a coffee day? 
    • Hi all, first time posting here. After years of feeling chronically exhausted, depressed, irritable, bloated (the list goes on and on...) and with a family history of autoimmune disorders, I finally convinced my doctor to test for Celiac and autoimmune disorders. All my results came back negative.  My celiac results were as follows   TTG IgA  <1.2 unit/mL reference range: <4.0 (negative)   Gliadin IgA (Deam) < 10.0 units reference range: < 20.0 units (negative)   Gliadin IgG (Deam) < 10.0 units reference range: < 20.0 units (negative)   Should I have my total IgA checked to rule out a false negative? Or is Celiac ruled out since all three tests came back negative? I don't see my doctor again for another two weeks to go over the results. I was convinced that I would test positive but since I did not, I want to make sure that I know if there is any other tests I should ask my for. Thanks everyone! Tiffany  
  • Upcoming Events