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

Daughter In Crisis
0

11 posts in this topic

Thank you for reading, sorry for the length....I am seeing a GE tomorrow for my own issues, highly suspect celiac disease. My 20 yr old daughter is a college athlete and has always eaten a healthy diet, not really a carb or sweets person (unlike me!). 5'9'' about 120 lbs. now. She vomited a lot as a baby (breast fed), very sensitive skin, eczema, constant runny nose, environmental allergies. In April she began allergy shots after testing positive for everything environmental - no food tests done. In July had sinus surgery. Lost about 10 lbs over the summer. Mid August spiked 102.5 fever, vomiting, diarrhea, headache, sore throat, swollen and very painful joints, abdominal pain. Ended up hospitalized with severe dehydration, spilling bilirubin in urine. Over 2 days deteriorated to complaints of breathing difficulties and chest pain when breathing. Blood pressure dropped to 70s over 30-40s. They ruled out Lupus, Kawasaki's, Lyme, Rocky Mtn Spotted Fever and everything else they could test for. She coded and ended up in ICU. Labs were sent to Mayo Clinic (mostly for tick- borne illnesses). Consults with Johns Hopkins. Lost another 10 lbs and is emaciated. Started Doxycycline suspecting something tick related, though no known bite. Was able to come home 3 wks ago. Diagnosis: Viral?, Tick-borne?, or "we may never know". Finished 10 days of Doxy. Was able to go to college (lives at home), but remained very weak with "upset stomach and some nausea". The past few days has gone down hill getting very pale again, diarrhea, "can't eat", joints hurt. I have been doing my own research for my own GI issues and it hit me that celiac disease could also be my daughter's problem (or one of her problems). My questions are: as we have already seen a ton of specialists (no GE) where do we go from here? Nobody ever thought of something food/gastro related and never checked for that. Can Celiac Disease present with this acute, life threatening illness? Did she have something else that triggered the celiac disease? Who do we see now? She was basically dying in the hospital and they could give us no answers. We just got 'lucky' (blessed) that she got better or the Doxy helped for a while? I am watching my strong healthy daughter become a debilitated shell of herself. She is pushing herself to go to school. No energy for work. If she crashes again I don't know if she will survive it. Can anybody offer some suggestions and how to get someone to listen to us and check for celiac disease? Any other ideas?

Thank you for sharing your stories and knowledge! Dixie

0

Share this post


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


Your poor daughter. :( Celiac could be what is making her unwell; it has been known to get quite serious in some individuals if left untreated.

These are the tests run in a celiac panel:



  • Anti-Gliadin (AGA) IgA
  • Anti-Gliadin (AGA) IgG
  • Anti-Endomysial (EMA) IgA
  • Anti-Tissue Transglutaminase (tTG) IgA
  • Deamidated Gliadin Peptide (DGP) IgA and IgG
  • Total Serum IgA

ttg IgA and EMA tests are quite specific to celiacs. Many doctors do endoscopic biopsies as well, although it's becoming less common if you have a definitive blood test.

She must still be eating gluten (equivalent to 2+ slices of bread a day) for a good 6 weeks prior to the test or the results will be negative. Approximately a quarter of celiacs have false negative tests so if you suspect gluten is the problem, and tests are negative, go gluten-free anyways and see if it helps. My mother had negative tests, and she is still in the process of going gluten-free, but she has noticed an improvement in her symptoms.

Did they check her for parasites as well? I would have guessed Lupus but... Did they rule out MCTD and UCTD too?

I'm afraid I don't have much advice. Good luck with the celiac tests. I hope she gets better soon. ((hugs))

0

Share this post


Link to post
Share on other sites

Wow. I'm so sorry to hear about this. I wish I had some answers for you but I don't. She MIGHT have celiac, but it sounds like there are other things going on too. I think they might be on the right track, thinking it might be a tick bite.

A couple of years ago a friend of mine suffered from the same symptoms you describe. She too almost died. She was hospitalized for a month and they did every test they could think of. She had been bitten by a tick when she was on vacation in Arkansas, but all of the tests for every tick-borne illness they could think of came back negative.

Yet they are discovering new tick-borne illnesses all the time. Bonnie eventually was released from the hospital, but without a diagnosis. It took her months and months before she was feeling somewhat better, but to this day she is still not right. She gets sick at the drop of a hat. If the rest of us get a cold that lasts a week, she will get bronchitis or pneumonia. When we get the 48-hour stomach bug, she will be sick with it for two weeks. Whatever she had, it seems to have practically destroyed her immune system.

All that said, I can only encourage you to put faith in the folks at Mayo. They are the very best, in my opinion. If they don't come up with a diagnosis from the blood sent to them, I recommend taking her there in person. The one in Rochester Mn. is the best. They will set you up with a payment plan if you can't afford it, and they WILL get to the bottom of this.

Good luck. Your daughter and your family will be in my prayers.

0

Share this post


Link to post
Share on other sites

Get the Celiac testing done. She will most like have to have an endoscopy with biopsy to get closer to a diagnoses.

The illness may have "triggered" Celiac. (or triggered symptamatic celaic)

untreated Celiacs do have some issues with liver tests. (it seems most common to have raised liver enzyme count)

Yes. some Celiacs have nearly died before getting diagnosed.

Yes. some Celiacs have died from "celiac crisis". (famous cases ~ the young girl from Poltergeist movie and Joey C., Kid Rock's close friend and "roadie", sorry if that isn't exactly his title of work)

Allergy shots may have contributed to the immune systems "trigger"

So start working with a gastro doc, there are enough gastro symptoms for Celiac testing and a gastro specializing doc.

Thoughts and prayers for your daughter for healing.

0

Share this post


Link to post
Share on other sites

Celiac doesn't typically PRESENT with a "crash" like that but it can be TRIGGERED by it.

Obviously, she has a lot going on and you are justifiably very concerned.

I know they're just bans-aids but try giving her probiotics and digestive enzymes. Regardless of food intolerances, I'm sure her GI tract is a mess after the doxy.

I suggest asking for vitamin and mineral levels to be checked, also. That could explain some of her fatigue. B's, iron, D's especially.

0

Share this post


Link to post
Share on other sites
Ads by Google:


Thank you all for the prompt responses. She has some follow up appts Thurs and Fri. but I don't have much hope that they can come up with anything new. I will get her in with a GE asap. I am on my way to pick up the medical records from her hospitalization and will look them over to see what was run re: anything celiac related and the other tests mentioned. I am a retired RN so I will be dusting off my cap! The pro/prebiotics are a good idea. Thank you for the time, advice and prayers!

0

Share this post


Link to post
Share on other sites

Mention Celiac testing to whatever Dr. you are following up with. Any of them can order the blood testing which is a good place to start.

0

Share this post


Link to post
Share on other sites

Lyme disease can trigger celiac. So can surgery (you said she had surgery in August).

Lyme or some of these "unknown" tick diseases can be chronic. If she is getting worse after going off the doxy, that is a hint, UNLESS she has also been upping her gluten consumption at the same time, could be a combination of chronic "unknown" tick disease and the return to a normal diet.

If this is an emergency situation, take her off the gluten crap like now and worry about the tests tomorrow, don't keep glutening her if she can't keep food down, just to get a positive test, (which is the standard medical advice). If she is emaciated, it is more important that she start being able to take in nutrition and liquids. The test would not suddenly be negative just from a few days to a week of gluten free. Also, if this is a gluten reaction, she may also be reacting to soy and dairy.

You don't have to see a Gastro doc for the full celiac blood panel, any PCP can order this, it's just a blood draw, if she has symptoms (she does, "nausea" "weight loss") they would be negligent not to be willing to look at this, a.s.a.p., HOWEVER, she can also be non celiac gluten intolerant, same symptoms, but it won't show up on the blood tests.

Effing ticks. I've had a horse very nearly die from a tick bite which caused a severe colic, and he was saved by IV antibiotics, and it still took him a while to come around from it, and he's been a bit metabolically "off" ever since, prone to grass foundering. Since this erlichiosis crap can kill dogs and humans, that was a miracle. We had another one who has had massive allergies to many typical horsey foodstuffs and insect bites from flies since he was vaccinated with an anti viral during a West Nile epidemic, right before he got really, really sick from another bacterial infection. And I've had dogs (have one right now) with severe wheat/barley allergies. I think there is a lot more tick-born disease out there causing other problems, than is generally acknowledged by the non rural community.

Are you in a West Nile disease hot spot area ? There can be more than one thing going on.

0

Share this post


Link to post
Share on other sites

"Did they check her for parasites as well? I would have guessed Lupus but... Did they rule out MCTD and UCTD too?"

I have reviewed the labs from the hospital and there were no stool tests done. No mention of MCTD either, but the Rheumatologist does want to follow up as she had a positive ANA and he wants to rule out something auto-immune.

I thank you all. I'm compiling a list of questions and lab requests to take to the Primary Care doc Friday thanks to your suggestions. She has eaten fairly well today. I am having a hard time talking to her about gluten free as she has a friend with Celiac Disease and "she can't eat anything and all of her food tastes like cardboard"! But that's a subject for another day (soon), we need to get through this crisis first! Thanks again.

0

Share this post


Link to post
Share on other sites

Thank you for reading, sorry for the length....I am seeing a GE tomorrow for my own issues, highly suspect celiac disease. My 20 yr old daughter is a college athlete and has always eaten a healthy diet, not really a carb or sweets person (unlike me!). 5'9'' about 120 lbs. now. She vomited a lot as a baby (breast fed), very sensitive skin, eczema, constant runny nose, environmental allergies. In April she began allergy shots after testing positive for everything environmental - no food tests done. In July had sinus surgery. Lost about 10 lbs over the summer. Mid August spiked 102.5 fever, vomiting, diarrhea, headache, sore throat, swollen and very painful joints, abdominal pain. Ended up hospitalized with severe dehydration, spilling bilirubin in urine. Over 2 days deteriorated to complaints of breathing difficulties and chest pain when breathing. Blood pressure dropped to 70s over 30-40s. They ruled out Lupus, Kawasaki's, Lyme, Rocky Mtn Spotted Fever and everything else they could test for. She coded and ended up in ICU. Labs were sent to Mayo Clinic (mostly for tick- borne illnesses). Consults with Johns Hopkins. Lost another 10 lbs and is emaciated. Started Doxycycline suspecting something tick related, though no known bite. Was able to come home 3 wks ago. Diagnosis: Viral?, Tick-borne?, or "we may never know". Finished 10 days of Doxy. Was able to go to college (lives at home), but remained very weak with "upset stomach and some nausea". The past few days has gone down hill getting very pale again, diarrhea, "can't eat", joints hurt. I have been doing my own research for my own GI issues and it hit me that celiac disease could also be my daughter's problem (or one of her problems). My questions are: as we have already seen a ton of specialists (no GE) where do we go from here? Nobody ever thought of something food/gastro related and never checked for that. Can Celiac Disease present with this acute, life threatening illness? Did she have something else that triggered the celiac disease? Who do we see now? She was basically dying in the hospital and they could give us no answers. We just got 'lucky' (blessed) that she got better or the Doxy helped for a while? I am watching my strong healthy daughter become a debilitated shell of herself. She is pushing herself to go to school. No energy for work. If she crashes again I don't know if she will survive it. Can anybody offer some suggestions and how to get someone to listen to us and check for celiac disease? Any other ideas?

Thank you for sharing your stories and knowledge! Dixie

Your daughters case was somewhat similar to mine. She sounds like she has had Celiac for awhile and now is getting to the point where she is so run down and dehydrated, it is becoming life threatening. If you present with classic Celiac, which I did, it can do this to you. I totally understand your frustration and worry...been there, done that. Doctors are that stupid that even when a person is losing weight and becomes dangerously dehydrated, they still don't see it.

You said your daughter "coded", which I take to mean her heart stopped and they had to resuscitate her? That can happen from advanced Celiac as the heart can stop from an electrolyte imbalance. Same issue with anorexics and bulimics...they starve themselves to the point where they suffer organ failure.

I was down to 97 pounds, was losing 1 pound per day, was so dehydrated I could barely walk down a flight of stairs yet I figured it out myself and had to ask for testing because no one in the medical field figured it out. I nearly died so I know where you are coming from.

She needs a Celiac panel (full) and then needs to go gluten free ASAP to see if she responds to the diet. Not sure I would put her through an endo because she is not too stable right now and they sedate you for that. Take the reins from the doctors and force them to go down this road. I wish you and your daughter well. I made a complete recovery once gluten free so there is hope for her situation!

0

Share this post


Link to post
Share on other sites

Celiac doesn't typically PRESENT with a "crash" like that but it can be TRIGGERED by it.

Obviously, she has a lot going on and you are justifiably very concerned.

I know they're just bans-aids but try giving her probiotics and digestive enzymes. Regardless of food intolerances, I'm sure her GI tract is a mess after the doxy.

I suggest asking for vitamin and mineral levels to be checked, also. That could explain some of her fatigue. B's, iron, D's especially.

my initial knowledge of celiac was that is was a uniformly fatal disease of the very young.....

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
      106,751
    • Total Posts
      932,195
  • Member Statistics

    • Total Members
      64,213
    • Most Online
      3,093

    Newest Member
    rrwalter25
    Joined
  • Popular Now

  • Topics

  • Posts

    • I wish they didn't use " gluten" as a headline.  People abuse and starve children for a variety of " reasons".  gluten-free was just one they picked, it could have been paleo or kosher or whatever... 
    • Ugh!  This again..... first ...it was one person...not a study... just someone's speculation. if I am remembering correctly - no one actually tested the retainer. The kid was a 12-16 yr old an drew could have gotten caught eating gluten, etc, etc, etc.   And then those internet folks who love to spread " bad news" or  use that stuff to further their purpose, jumped on it.  And then let's talk to a chemist or plastic scientist - if the plastic leaches our actual proteins, like gluten, wouldn't the plastic piece break down after a while? welcome to the world of Celiac internet myths.   adding - none of the Celiac Centers, Associations, etc have warned people not to use a retainers.
    • Ok, so, here goes. Today I had my teeth cleaned, and this was my first time there since I've been diagnosed. I double checked that their tooth polish is gluten free, and they told me it's safe. I feel fine. Tonight I was at Walmart looking at buying some mouth wash (I was scolded, as per usual), and I Googled gluten free mouth wash. I stumbled upon an article about gluten free products and dental stuff. The person mentioned a study that was released stating that a child's retainer was making her sick because it contained gluten - in the plastic. I had braces when I was a teenager and had them out about 12 years ago. I got one of those old school retainers. The kind with the plastic part for the roof of your mouth and the metal wire that goes around the front. It's cuuuuute. Let me tell you. Anyway, I decided to delve into this more, because I don't know if my retainer is safe now. I found an old thread on here where it looks like people were debating this, and for the most part, seasoned Celiac's agree that it's a bunch of bunk.  Do people have opinions? I know that many of you do a great deal of research into Celiac and that you may have some information. I'm looking for real science - not fear tactics. I wear my retainer religiously, My mom paid almost $5,000 for my teeth to look like they do, and I'm not about to let them get shnaggled again. I'm 29, but they still move if I don't wear my retainer. I've been debating getting a new one - one of the plastic ones that you can't really see, but I don't want to shell out the dough for that until I have to. I'm shocked mine has held up as long as it has.  When I was diagnosed back in November my TTG was >100. Two months later it was 12. So I assume that my little retainer isn't causing much damage, as that's pretty significant. I have to go back in July to have my blood tested again. In the meantime, is this something to stew over? I have no idea where my retainer was made, or who made it. It was a long time ago and I bet if I called my orthodontist to find out who the manufacturer was they wouldn't be able to tell me. Maybe I'm wrong. It was 2004 or 2005, so I'm assuming they won't know at this point. But I could check if people think I should. I feel fine, for the most part. But I was a silent Celiac when I was diagnosed so I don't trust my body to not tell me if I'm being glutened. I'll just say that.  Thanks!
    • They are awesome! But they are not available at Starbucks at some places--like hospitals. Pity!
    • Howdy, No stranger to forums as I've found them to be a great tool for my interests in motorcycles and old trucks but now find myself needing to educate myself in dealing with Celiac Disease. I'm a male in my fifties now and have had to deal with eczema since I was about six years old that was mostly contained to my feet and legs and outgrew it for the most part in my teens. I would have occasional flare ups but about three months ago my elbows and upper torso broke out in blisters and itched like no tomorrow. I hoped it would go away and used Cortisone for relief but finally made an appointment with the Dermatologist. As I'm sure most do, I began researching the internet since this outbreak seemed different than my eczema as a child, and wondered if DH was the culprit. When I showed the Doc and expressed my concern he said, "I have dozens come in that think they are Celiac and are not...but you, most likely are". He did two biopsy's, one for a local lab and the other he sent to the Mayo Clinic and a week later it was confirmed. At the time of the biopsy results I had been gluten-free for two weeks but to my surprise they told me to start eating gluten again as they wanted to do a upper GI scope and needed some lesions to biopsy. I took full advantage and formed a bucket list that ended with pancakes the night before the scope. Still waiting for those results that should come any day and started Dapsone the day after. They have me doing blood work weekly to start and I hope to be off that stuff within a year. My wife has been gluten-free for the better part of ten years as gluten and dairy just don't agree with her. This has been helpful to me since she knows what the good stuff is and we both do the weekly shopping together and so I've learned a lot already, I am somewhat concerned about hidden gluten though, so I still have much to learn. Looking forward to meeting other members of the forum.
  • Upcoming Events