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

Ads by Google:

   Get email alerts  Subscribe to FREE email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store.

8 posts in this topic

Usually, I research the issue I am having before I ask more questions.  This time I'm just too overwhelmed to do so.  Please forgive me for the repetition that will surely occur in this post.



My immune system has been through the ringer in the past month.  A UTI that didn't clear with cipro, Bactrim for the same UTI, an accidental glutening, serum sickness reaction to the Bactrim (the day after the glutening) combined with high levels of environmental allergic reactions (just the usual itchy nose and eyes, sneezing).  My allergist said that the serum sickness reaction could take up to 2-4 weeks to dissipate.  Well, this coming Friday makes it 4 weeks.  The lymph nodes have just returned to normal- they were swollen along the side of my neck.  I think my energy is coming back to normal, but it's hard to tell because I caught my husband's cold (really?!?) and it still hasn't run its course.


The thing that's sticking is a slightly swollen tongue- enough to hurt because it's pushing past the boundaries of my teeth and my tongue has a scalloped edge.  It was part of the serum sickness reaction, but now it comes and goes as it pleases and for the past few weeks I've been suspecting other food intolerances/allergies.  I've limited my diet mostly by cutting out raw fruits and veggies as well as nuts.  If I stick to these items, the swelling seems to go down. I've been swollen-tongue-free for a couple of days and this morning I had a lara bar with cashews in it.  (Please God no, not the lara bars!) A few hours later- bam! swollen tongue and cheeks.  I feel normal in every other way.


My freak out is being perpetuated by the fact that I leave the country for 6 weeks at the end of June.


This leads me to so, so, so many questions for you all:

  • Would my immune system melt down trigger the development of other food intolerances?
  • Do any others out there experience tongue swelling with food intolerance?
  • From what I've read, if this IS happening, it's a delayed reaction, which would seem to indicate an intolerance and not an allergy.  Should I be worried about anaphylaxis?  (BTW- I'm petrified of anaphylaxis.)
  • Do I have time to do an elimination diet?  How should I proceed?
  • Because I've limited my diet, I eat very few things now.  I've heard chatter about a 4 day rotation, but need advice on how to go about that.
  • Is it possible that it's just taking me longer to recover from the SSR as it has taken me longer to recover from just about every other illness I've encountered this year (stomach bug 3Xs as long, aforementioned UTI- case in point)?

I have another appointment with my allergist, who was adamant that this was not a food allergy, just in case the symptoms don't go away.  But that is the week I leave town.  I'm scared to eat.  I'm scared to stick to the foods I know are safe because that might cause me to become intolerant (not really sure how that works). I'm scared about eating something "new" and swelling like Violet Beauregarde after she downed Wonka's untested gum. :(  Your advice is much appreciated.





Share this post

Link to post
Share on other sites

Ads by Google:

I'm pretty tired, but I can't go to sleep until I post a response.  Please try to do some research on Cipro (quinolones) and Bactrim.  I have experienced neuropathies after taking Cipro in the hospital post gallbladder surgery for over six months (and I think I got off lightly).  The side effects of these two drugs are severe and many of the symptoms you stated seemed to match.   Here's  a link to one site (and it's a legit government site), but there are several.



WARNINGS: All quinolones cause erosion of cartilage in weight-bearing joints. They may cause convulsions, increases intracranial pressure, toxic psychosis, CNS stimulation (i.e.nervousness, lightheadedness, confusion, hallucinations).Should not be used in anyone with seizure disorders, or cerebral arteriosclerosis. There have been deaths due to anaphylactic shock, and cardiovascular collapse. Also occurring are tingling, itching, facial swelling, and difficult breathing. DISCONTINUE at the first sign of a rash or any hypersensitivity. Pseudomembranous colitis has been reported from nearly all antibacterial agents (mild to life-threatening), and anyone taking Cipro having diarrhea should immediately check with his prescribing physician. Antibacterial drugs may kill off normal intestinal flora, resulting in an overgrowth of Clostridia. It produces a toxin that is a primary cause of "antibiotic-associated- colitis". Achilles and other tendon ruptures requiring surgical repair, resulting in prolonged disability can occur from quinolone use. Discontinue Cipro, and consult your physician, if you experience pain, inflammation, or tendon rupture.



The above is just a portion of the drug warning label that the FDA requires Bayer to insert in the box.  Other people have experienced much worse side effects (you can find them on the internet.)


I urge you to do research on these two drugs as they may be the cause of your symptoms and not food allergies/ intolerances, etc.    I will never take these drugs again as there are other safer choices!  


Finally, I do advocate four day rotational diet plans for allergies(and further prevention of), celiac disease or anything related to healing the immune system.  It's super simple.   There are plenty of examples on the internet.  And don't forget to add new foods there are lots of lovely choices!  Most people get stuck in rut eating the same 20 foods.


Good luck!


Share this post

Link to post
Share on other sites

As I have a major problem with antibiotics of any kind,  I share your frustration.


I have a few thoughts,IMHO and  FWIW.


(1)To balance your system after rounds of antibiotics, you need probiotics. . 


(2) To avoid future UTIs, you can drink cranberry juice daily and a lot of water. Hydration is important.My Mom had them often and I suggested she do this and (knock wood) she's been UTI-free.


(3) I never experienced tongue swelling as a result of food intolerances, but every body is different and who knows why it has happened.

Lara bars do not have much in them except dates and nuts. Perhaps they just do not agree with you right now.


I do not know where the concept of "eating too much of one food can cause an intolerance" came from, but it is not based on science at all.


I flood my system with fresh corn every summer since that's the only time we have it and I LOVE it and I have never become "intolerant" of it.

if you feel fine eating chicken, rice and green beans, then eat it.


Eat your "safe foods"!!


You cannot be afraid to eat hon---you'll just be undernourished!



(4) When I was in the state you describe (before DX) and I felt like one giant allergic reaction (but the allergy tests were negative)

I did the failsafe diet for a month and I felt wonderful. Plain food, free of the top 8 allergens, preservatives, etc. and it will decrease

the inflammation in your system. (fingers crossed)


Obviously, do NOT eat any gluten grains (as those are included on the menu) but follow the suggestions for "safe foods" ...and in 2 weeks, you should feel better. If not, then food intolerances may not be your problem at all.


Good luck. I hope you feel better soon, Let us know how you make out.


Share this post

Link to post
Share on other sites

Thank you cycling lady and Irish Heart for your feedback!

What I have taken away from them in general is to have more patience.    


Cycling Lady- I didn't seem to be affected at all by the Cipro, it was really the Bactrim that did me in.  Unfortunately, I confused the first symptoms of something going wrong with a glutening, so I took 3 doses of the drug after I really should have stopped.  Upon the first night of researching the adverse affects, it's apparent that I got off lucky as well.  Many people who continued to take the drug are no longer with us- yikes.  Believe me, I have had multiple doctor's visits- two to the emergency room- since this occurred and I'm not taking it lightly.  I guess I'm just at my rope's end since it has been so long.


IH- I will continue to eat and I thank you for your encouragement. I'll let you know how it all pans out.  Best case scenario, this is just the effects if the Bactrim hanging on a bit longer than in the typical person and I just need to wait it out.  Fingers crossed!


Share this post

Link to post
Share on other sites

Yeah, I am not a big fan of Bactrim or cipro (always have bad side effects from them) but they are necessary "evils" at times, when warranted.

but I will say that high dosing the probtioics for a few days ( and I mean high--like 5 doses of multi-strain ) I righted the ship, so to speak.


I do hope you feel better soon. I know how "yucky" this can be.


Share this post

Link to post
Share on other sites

I have had mysterious swollen tongue.  It does seem connected to foods I am intolerant of.  I think I know now, that gluten had been causing my whole body to swell, so a little swelling here or there doesn't alarm me too much.  I have been tested for true allergies, but do not have them.  I do try to figure out a cause when I feel my tongue swollen.  The four day rotation diet helps in determining what I ate.


About the rotational diet.  I rotate families of foods.  For example one supper I choose from squash, sweet potato, zucchini, carrots, celery, and fennel bulb for vegetables. I would eat the same meat/vegetable combo for lunch the next day.  At supper, that day, I would have legume or cabbage family.  I rotate nut flours, meats, vegetables, fruits, and oils.  I did find a lot of information about setting it up on the internet.  My daughter helped me to make a month long rotation plan, so I don't have to think about what is for dinner that night each night.  I just check the chart and make it. 


A little sample:


Protein food families:  Eggs, beef, fish buffalo, lamb, Elk, chicken, bison, duck

Vegetable: Orange vegetables, legumes, cabbage/broccoli, Beet family

nut (Grain alternative) Macademia, hazelnut, pumpkin, coconut

oil  Olive, coconut ( I am down to these two) Butter if you tolerate dairy

Fruit:  banana, avocado, strawberries, cherries, raspberries


A rotational diet helped clear my mind.  It took 4 days.  I had been doing many other things, so I don't know what it alone would have done.




I hope you are feeling better soon.




Share this post

Link to post
Share on other sites

Hi Diana,

Thanks for all the rotation info.  It sounds like it helps you to pinpoint the foods that bother you.  How long did it take to weed things out? When your tongue does swell, how long does it last?  Do you also get swollen cheeks and lips?  All I can see is the tongue scalloping.  I can't see the lips or cheeks as visibly puffy, but I can feel that they are.


If this is due to a food, I ate it yesterday late morning and the swelling is still there.


Irish Heart- I take probiotics regularly and double my dosage when I was on the antibiotics.  That worked so well that I now double them on some days!  It really rights my ship- for sure!!


Share this post

Link to post
Share on other sites

Hi Diana,

Thanks for all the rotation info.  It sounds like it helps you to pinpoint the foods that bother you.  How long did it take to weed things out? When your tongue does swell, how long does it last?  Do you also get swollen cheeks and lips?  All I can see is the tongue scalloping.  I can't see the lips or cheeks as visibly puffy, but I can feel that they are.


If this is due to a food, I ate it yesterday late morning and the swelling is still there.


I would have to say that I only notice the swelling the next day.  My cheeks and lips do swell also.  Yeah, I can't usually see it, but I bite my cheeks, crowd the tongue, and am uncomfortable.  I began my rotational diet several  months back and I am still weeding.  I try foods more than once before I remove them.  The symptoms are rather hard to see, and sometimes it  takes a while to be fully convinced they are there.  They seem to become clearer as the rotational diet continues.  The contrast between having symptoms, and not having becomes easier to notice.


I try add new foods, that I have never eaten before, as often as I can.  I know my body doesn't have antibodies to them, because I have never had them.


Sorry, I didn't get back I just realized I need to keep going back through incase someone does want more information.  You can always send a message if you don't get all of the information you want.




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

    • celiac disease is psychosomatic
      The letter I am suggesting has nothing to do with the doctor.  I would type it and walk it to the desk when are in the building for your other appointment. 
    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
    • Nature's Bounty Protein & Vitamin Shake Mix
      Sort of funny.  Says no wheat at the bottom but also says this " Other Ingredients: Proprietary Protein Blend (Soy Protein Isolate, Whey Protein Concentrate), Cocoa (processed with alkali), Inulin, Oat Fiber, Fructose, Natural Flavors, Maltodextrin, Soy Lecithin, Tricalcium Phosphate, Xanthan Gum. Contains milk and soy ingredients. Contains wheat ingredients.   I bet they do not use gluten free oats, so its a bit of a gamble.  Not one a Celiac should take as there is no such thing as "not severe Celiac".  Even if you don't feel the damage, consuming gluten will start damaging you.  Maybe its just catching up with you.
    • celiac disease is psychosomatic
      I am assuming United States- It has been a long time since I studied health info law, but I doubt this part has changed.  A doctor would not change the record just because you said its wrong.  They might make a correction if they remembered or had actual facts (like a lab test read incorrectly or appearing later).  What you are allowed to do is write a letter to be included in the record.  You need to put in larger letters at the top, something like "This note must be included with any release of information from my medical record".   I am not sure how it is handled with electronic releases these days.  You could contact a medical records department (ask for the release of info section)  at a large hospital near you and ask how they handle it.  Be nice and tell them it isn't a problem with their facility but you know they are the experts.  I would urge you to make the note short and not nit pick.  State the big basic facts that you don't agree with and don't worry about the little things.  People will not read a really long note or it will make you look crazy (in a bad way  )   And for the apt with your neurologist.  Don't bring it up, see what he/she says first.  Half the time they don't read all the little details or even receive more than a brief - tests run & results and maybe a brief summary.  You might be surprised, your doc might think the person is a bit of a jerk, but hoped you might mesh with them. I recently had my doc agree with me when I said I couldn't stand another doc that had been in her practice.  lol
    • celiac disease is psychosomatic
      I called this doctor's office again to inquire if my medical records have been corrected. When I called to amend my records because there was inaccurate information, the staff member told me that I need to write my complaint in email to doctor. So, that's  what I did. The doctor wrote things I said that I didn't say, which changed the meaning of what I said so I wanted to correct that. I talked to a different staff member today who irritated me in the past by saying things she was going to do which she never did. Her tone of voice is condescending and argumentative like she refuses to help you or that's probably what makes me feel irate. Today she said the doctor wasn't going to commit fraud by writing something I told her to write. I don't feel irate when I talk to the other staff member who answers the phone. Anyway, this staff member said she printed my email for the doctor to read, and she'll reply when she wants to reply (never). I said that it's not the doctor's choice to choose whether or not to correct inaccurate information in medical records. I said I think by law, it must be done so if the doctor continues to ignore my request to correct inaccurate information, then I should probably file a medical complaint somewhere. Finally, the doctor called me back. She asked what was inaccurate when I said I wanted to correct the incorrect information. Then, I asked if she read my email. She said she did not have time to read patient STORIES. I said a good doctor would make the time to read a request to correct inaccurate information in a patient's medical record. Then, she said I'm sick to keep writing letters to her. I said I only wrote one email to her and it was because a staff member said that is how to amend the inaccurate information. She added that if I really had physical symptoms, I would not have been able to get a college degree or write letters to her. Although I explained to her during my consult that I took online classes and did homework in bed with lots of breaks, she thinks I must be pretending to have symptoms. I also explained during my consult that half of my dizziness and migraines are gone since being on a gluten-free diet. Yes, this makes sense why her office makes me feel so irate! I ended the call by asking if she was going to correct the inaccurate in my medical records. She kept rambling on how only sick people keep writing letters to doctor. Again, I told her I only wrtote one email to her and that's because her staff member told me to correct inaccurate information in record. The staff member recommended this instead of filling out a record amendment form, which I don't think they have. She said file a complaint like it was a joke. Since my neurologist referred me to her when I inquired about help for my memory problems, I'm afraid she will tell him negative things about me. Her office is just across the hall from his. Doctors are more likely to take the word of another doctor over a patient. In contrast to this doctor, my neurologist is a real competent doctor. Do you ever think that sometimes doctors are crazy, but they get away with making others think it's the patient who is crazy because they are more powerful? This doctor is a neuropsychiatrist. I will never see a neuropsychiatrist again due to this bad experience.  My appointment with the neurologist is in another week. I don't know if I should briefly mention my bad experience with this doctor so he won't believe her if she tells him that I am faking my symptoms. It would be like I was faking my whole life if I was faking my symptoms. Maybe I could say something like the brain testing wasn't very helpful with that doctor since she assumed my symptoms were all in my head  because I graduate from high school and obtained a college degree in the past. I also told her during my consult that I received average grades in high school because I often went straight to bed after school not having chance to do homework. This feels like abuse or abuse of power from the doctor. I wish I recorded the phone conversation with this doctor calling me names.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it. Thank You,
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
    • Most Online

    Newest Member