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Daughter In Crisis


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#1 Dixie81411

 
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Posted 18 September 2012 - 07:13 AM

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
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#2 nvsmom

 
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Posted 18 September 2012 - 08:10 AM

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))
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#3 bartfull

 
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Posted 18 September 2012 - 08:11 AM

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.
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#4 mommida

 
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Posted 18 September 2012 - 08:34 AM

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.
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#5 pricklypear1971

 
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Posted 18 September 2012 - 08:40 AM

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.
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#6 Dixie81411

 
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Posted 18 September 2012 - 09:24 AM

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!
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#7 eatmeat4good

 
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Posted 18 September 2012 - 02:58 PM

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.
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#8 Takala

 
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Posted 18 September 2012 - 04:38 PM

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.
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#9 Dixie81411

 
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Posted 18 September 2012 - 06:24 PM

"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.
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#10 Gemini

 
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Posted 19 September 2012 - 09:30 AM

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!
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#11 frieze

 
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Posted 19 September 2012 - 04:09 PM

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.....
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