Help- Worried For My Husband

[rileyyjo]

Hello everyone,

 

My husband is only 25 years old and has been suffering from odd medical symptoms for the last 7 years, but has been reluctant to see a doctor. We think that he may have celiac disease, so for the last 2 1/2 months he has been following a gluten-free diet.

 

Some of his symptoms include:

 

-Alopecia- hair-loss in round spots all over his head, face, arms, and legs.

-Constantly using the bathroom- #2 sometimes 5-10 times a day on a bad day.

-Odd rash right above the crack of his rear. One Doctor diagnosed it as a yeast infection, but it didn't go away with multiple treatments. Another has diagnosed it as psoriasis. 

-Lots of bloating and cramping

-unable to lose weight 

-Occasional extremely thick mucous in throat that will almost make him choke and cough until he spits it up. Not just from a virus, he gets it every few months for weeks at a time.

-When he catches a virus, he is much more ill and can be sick for two weeks, when the rest of our family is only sick for 2 days.

-When he poops it is very greasy looking and sometimes has undigested food in it.

-Occasional vomiting and nausea in the mornings. Usually after he drinks a beer or eats something containing a lot of gluten the night before.

 

He has started seeing a Dr. who said he is almost 100% positive he has Celiac Disease, but is also testing him for Lupus, Cystic Fibrosis, and Hepatitis among other things. He has decided to wait for his testing until after the first of the year due to insurance purposes.

 

I am concerned because his symptoms have suddenly worsened the last two days. We discovered that he vomits more in the mornings if he has dairy, so for the last five days he has not had any dairy. On the third day without dairy (keep in mind he is also not eating gluten), he vomited five times before lunch. He says his stomach pains are extreme and worse than any reaction he has had before. He was fine after lunch, and for the rest of the day. Then this morning he woke with the same pains and the extreme vomiting. He has always vomited in the mornings on occasion, but it has never been accompanied by such extreme pains. He also usually only vomits once or twice. 

 

He is getting so discouraged because he thought we may have discovered his problem even though he has not yet been tested, so he is starting to feel like all of this has been a waste of time.

 

Do you know if celiac disease can cause vomiting in the mornings? Is that something that can be typical of someone with the disease even if they are trying to cut our gluten?

 

 

[kareng]

vomiting isn't usually a symptom of Celiac - but it can be in a few people.  

 

Remember - he must be eating gluten for a prolonged period to get tested for Celiac disease.

 

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[julissa]

before I was diagnosed I had bouts where I was vomiting uncontrollably with D for hours on end. nausea, dizziness and brain fog mixed in. once I was diagnosed I gave up gluten and felt much better, but still had issues, until I got my allergy to dairy and soy diagnosed. then I was a new woman! hope he gets to the bottom of his issues soon. if he's off gluten, he won't be able to be tested.

[psawyer]

Vomiting was one of my symptoms.

[nvsmom]

The first six months gluten-free can be very up and down. Symptoms will come and go in seemingly random ways.  The return of nausea could just be a bump on his road to recovery.  Recheck his food for possible sources of gluten just to be safe.

 

 All that being said, did they do any tests for celiac disease at all?  For blood tests to be accurate he will need to be eating gluten (ie. 1-2 slices of bread per day) in the 2-3 months prior to testing.  The longer he is gluten-free, the longer the gluten challenge will need to be when testing.    If he does have celiac disease, you'll need to have his family tested too - there is a genetic component to celiac disease.

 

Best wishes to him.  I hope he starts to feel better soon.

[shadowicewolf]

  On 12/5/2014 at 3:04 PM, kareng said:

vomiting isn't usually a symptom of Celiac - but it can be in a few people.  

 

Remember - he must be eating gluten for a prolonged period to get tested for Celiac disease.

 

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It was one of mine.

[GFinDC]

Welcome Rilyyjo!

 

Guess I am one of a few also, as I had upchucking too.  I also was often sick in the morning, and avoided eating until afternoon because of it.

 

The antibodie tests are a simple blood draw.  They are the first step in testing.  Unfortunately he started the diet already and the results won't be reliable if they are negative.  But if they are positive they do prove the antibodies are reacting.

 

It makes a lot of sense to go ahead and get the antibodie tests now, rather than waiting a few months.  The antibodie levels drop off after we stop eating gluten.  Then there is nothing to show on the tests.  That doesn't mean the person doesn't have celiac disease though.  It just means they aren't eating gluten anymore.  Getting the antibodies levels back to a testable level in the bloodstream may take 3 months of eating gluten again.  Which can be a very unpleasant experience if the person does have celiac disease.

 

Recovery (healing) from celiac disease can take months.  A year or more may be needed.  There are lots of ways to accidentally get gluten in your system when you are new to the gluten-free diet.  Our systems seem to get more sensitive and react to even lower amounts of gluten after going gluten-free.  Amounts as small as a crumb can cause a reaction.  Kissing someone who has just eaten gluten is a problem too.

 

Celiac disease antibodie tests

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

[SMRI]

Unfortunately, being gluten-free for 3+ months is going to alter the outcome of his Celiac testing.  The illnesses and greasy stools are something the look for with Cystic Fibrosis.  There is a form of CF that is "adult onset"--which really means symptoms worsen to the point that adults seek treatment.  I would also make sure they check for immune disorders and make sure they check the IgG subclasses, not just the overall IgG levels.  Also, if he has an immune disorder, specifically IgG and IgA deficiency, his Celiac testing will not be accurate either.  He might be a case where they diagnose based on endoscopy results and response to gluten-free diet.  After 2 1/2 months, if you are 100% positive he is not getting any gluten, she should see some relief in symptoms though.

[sunny2012]

I threw up constantly. It took me 6 months on a gluten free diet to really start feeling well on a consistent basis.