Please Help

[c.haines1178]

I feel awful right now, at 2 am with my joints and pins and needles on fire in my fingers as I type this so will try to be thorough but brief, but I am in need of advice.

 

For the last 5-6 years I have been dealing with progressively worsening symptoms: in the beginning it was that I was starting to get cavities more often. Teeth have always been good and steadily worsening in that area. Exhaustion and slight depression. Chalked it up to being a mom of 3.  Mild joint pain

 

This last year: extremely uncomfortable bloating, severe exhaustion, swollen fingers (I'm a hairstylist. This is NOT good!) with pain in joints. Rheumatoid type symptoms there mostly in hands but weak stiff joints in general all over. Stomach pains that I contributed to pelvic inflammatory disease which I was recently diagnosed with after a severe episode leading to an ER visit and ultrasound, but in looking back I realize I have often had stomach pains that were not "the same" as this.  Very bloated and uncomfortable. Occasional diarrhea that seemed to come on suddenly or constipation. Nothing over the top, but fairly increasing in occurrences.  Canker sores occasionally and mouth suddenly feeling severely dry to the point of burning sensation.  Headaches more and more frequently

 

Most recently in the last month: worsening of all the above, and what prompted me to seek medical advice, was this horrible pins and needles in my hands and occasionally feet.  Awful and didn't let up for over a week.  We just started working on a new hair salon venture and the location was previously a papa johns. This severe pain in my hands began just a few hours after spending the afternoon in there chipping tile baseboard squares from the walls.  I have no insurance so when the pain got so bad and didn't seem to want to go away I called a good friend who is a nurse (also is celiac) and talked with her. She began asking me about other symptoms bothering me lately and in the past and said that my symptoms were similar to what she experienced with celiac. I had never heard of it! she suggested that since the only remedy was gluten free diet that I try to take 2 weeks and go off gluten.  To see if that helped and if I was unable to go to the doc for a while, that would give me a starting point and possible relief.

 

For the last month I have been gluten free. After 4 days in I decided to "test" and have a biscuit. Ugh. Pins and needles returned. Exhaustion within an hour to the point where I had to go take a nap and overall not feeling great, bloating...  But not "excruciating" stomach pains or diarrhea where I couldn't leave the bathroom type issues.  And sorry for tmi, but it seems weird. Sometimes (before going gluten free and when I occasionally felt like I got some hidden gluten somewhere) I would not feel "diarrhea", but would go to the bathroom to pee and loose stool would just occur. Like I didn't have the feeling of "oh gosh I have to go NOW". I could hold it a bit... but it would just be very loose.

 

I have just gotten health insurance and have been reading that you need to have been on gluten for 8 weeks or so for testing to be accurate so I thought, well, I better start eating gluten and dealing with it for a bit so that bloodwork will be accurate when I go in.  OH MY GOSH.... it was horrific. My symptoms seemed to be so much worse than before!  I went 2 days eating gluten whenever I felt like it. Tonight I'm dying.  Nausea, pain, diarrhea "feeling" but nothing seems to be actually happening there... but SO much worse! There's no way I can function like this for 8 weeks!

 

My question here for y'all:  if this was anything BUT celiac would I be having such a huge reaction this way? I can't imagine! I feel like going gluten free helped tremendously in just 4 weeks... but 2 days of gluten and I am even worse in my reaction than ever. Would just being "allergic" do this?! I told my boyfriend tonight when I was eating a salad at Applebee's (probably got glutened there because I'm feeling worse and worse after dinner) that there's no way I can do this for 8 weeks. I don't care if results come back negative on blood work, I can't do this. 

 

But is there really anything else on earth that this would be BUT celiac with this horrible of pain and sick?

 

 

[LauraTX]

The short answer to your question is that you probably do have celiac disease.  There are some people who had similar circumstances and just call themselves Celiac because doing a gluten challenge would be unbearable.  There are some downsides to not knowing, particularly if you have or may eventually have kids.  But if you feel content with not having the diagnosis on paper and will take eating gluten-free seriously for life, you will have gone the same route as many other people.  If you haven't already, there is a good bit of discussion on this topic that has happened and you can use the search function to see what some of the other replies have been.  

 

The one test that can be done accurately while being gluten-free is the genetic test.   I would recommend keeping your GI appointment and letting them know exactly what you let us know here, and they may go the route of only doing that for now and then go from there before they put you through anything else.  The genetic test especially will help you evaluate risk for family members that may also have Celiac symptoms.

[Fenrir]

I know how you feel. I had most of the same symptoms you have now and I suffered with it for months. I also was pretty sure I had ceiliac but held out another 2 months on gluten to get an official diagnosis. So, I know it is difficult but I think it was worth it just to know for sure. Each person has to make that decision themselves. 

 

The good thing is now that I have been gluten-free for about 4 days I'm already  noticing that I feel better.

[c.haines1178]

Thanks.  Last night we ate at Applebee's. I looked at their menu, told them about cross contamination, blah blah. Ordered a side salad and their "acceptable" queso dip.   OMG. 2 hours later, I was wrecked.  Worse digestive issues than ever before, couldn't sleep the entire night and still feeling residual effects of it.  Nausea and that horrible stomach turning but not actually having diarrhea (sorry tmi)...pins and needles in my hands, arms, feet.  Awful.  The problem is, there's no way when I am trying to open a new salon by June that I can deal with this and add gluten back in.  I can't NOT sleep at night. I can't feel like this and be productive to help with construction stuff and I can't have this horrible brain fog! I completely forgot about an interview I had scheduled the other day! Not ok!  BUT if I wait until after construction is completed and then add gluten in for a few weeks before testing, I will not be able to work in said salon, lol.  I am a hairstylist. That is my living.  I can't do that when my joints are swollen and my fingers are on fire.  So I feel a catch 22 here.  At this point, I truly do not think its just an "allergy". I will hopefully get fully diagnosed in the future, and perhaps my GI doc when I can go next month will be able to get some useful info with bloodwork and is willing to biopsy, which I will push for just to be certain... but this could not be happening at a worse time...

[nvsmom]

It's also possible that you have non-celiac gluten intolerance (NCGI) which causes all the same symptoms as celiac disease minus the damaged intestinal villi and possible DH rash. If you do test, and your results are negative, try the gluten-free diet anyway as you definitely appear to have a problem with gluten. Unfortunately at this time, there are no reliable blood tests for NCGI so diagnosis is done with a positive response to the gluten-free diet.

 

If you decide to test at a later date, you know that accurate testing will require (a horrible) 8-12 week gluten challenge consisting of the equivalent of 1-2 slices of bread per day. If possible, it might be better to test sooner as you might be able to get away with a shorter gluten challenge since you were only gluten-free a month.... I completely understand if you need to skip the testing though; it's a pretty barbaric way to diagnose a life threatening disease - making you sicker.  

 

I hope you feel better soon.  Joint pain often is one of the slower symptoms to improve, so make sure you give the diet a good 6 months before judging it's effectiveness.  

 

Good luck!

[NoGlutenCooties]

Welcome to the Forum!

 

I just wanted to add that it would be a good idea to get your kids tested every couple of years.  If any of them ever develop Celiac, then you can rest assured you have it too - it's genetic.  So at the very least, you'd have to be a carrier for them to get it and coupled with your symptoms, it's a safe bet.

 

If it were me... given your severe reaction to gluten... I'd call myself a Celiac, go 100% gluten free for life, and never look back.

[kareng]

Welcome to the Forum!

 

I just wanted to add that it would be a good idea to get your kids tested every couple of years.  If any of them ever develop Celiac, then you can rest assured you have it too - it's genetic.  So at the very least, you'd have to be a carrier for them to get it and coupled with your symptoms, it's a safe bet.

 

If it were me... given your severe reaction to gluten... I'd call myself a Celiac, go 100% gluten free for life, and never look back.

Actually, this isn't quite true. If a child has Celiac, then a parent might have at least 1 gene for celiac. There are 2 parents and a gene can come from either or both. And, just because you have a Celiac gene does not mean you will get Celiac disease. About 30% of people carry at least 1 gene for Celiac.

[Fenrir]

Actually, this isn't quite true. If a child has Celiac, then a parent might have at least 1 gene for celiac. There are 2 parents and a gene can come from either or both. And, just because you have a Celiac gene does not mean you will get Celiac disease. About 30% of people carry at least 1 gene for Celiac.

Yeah, the kids being positive really doesn't mean much, the could have gotten it from either parent.

[KCG91]

Testing can be such a pain... I started to notice symptoms last summer, between my penultimate and final year of university and was diagnosed by two blood tests (one with my home GP and one with uni GP) in September. It would be a three month wait to see a gastro and then another month for a biopsy and scope. Because it was messing up my ability to work during this important year I (and fortunately both doctors agreed with me) decided to take the very high blood test results as a diagnosis, go gluten free and see how I responded. My symptoms (and anaemia) have cleared up and my blood test at three months gluten free showed a massive drop in antibodies. Just another possibility - but obviously for blood tests you need to be eating gluten. Good luck with your salon!

[kareng]

Welcome to the Forum!

 

I just wanted to add that it would be a good idea to get your kids tested every couple of years.  If any of them ever develop Celiac, then you can rest assured you have it too - it's genetic

 

.

  

Actually, this isn't quite true. If a child has Celiac, then a parent might have at least 1 gene for celiac. There are 2 parents and a gene can come from either or both. And, just because you have a Celiac gene does not mean you will get Celiac disease. About 30% of people carry at least 1 gene for Celiac.

A little info to back up what I am saying:

Open Original Shared Link

"Genetic testing

The genetic test will show if the genes necessary to develop the disease are present. This test is also good to rule out the disease. It can also be used to indicate the need for antibody testing every 3 years or immediately if symptoms appear.

Genetic testing may be particularly important for 1st-degree relatives (children, parents, siblings) of someone with biopsy-diagnosed celiac disease. Research shows the prevalence for 1st-degree relatives to be between 4-16%. Our own experience when testing for celiac disease in 1st-degree relatives is a prevalence around 5% (or 1:20).

Genetic testing is done with a blood test, saliva test, or cheek swab."

[NoGlutenCooties]

Yeah, the kids being positive really doesn't mean much, the could have gotten it from either parent.

 

True.  I was adding that to the list of symptoms.  Taking both into consideration I think it's a pretty safe bet that Celiac is the issue.  Not 100%.  But a safe bet.

[NoGlutenCooties]

Actually, this isn't quite true. If a child has Celiac, then a parent might have at least 1 gene for celiac. There are 2 parents and a gene can come from either or both. And, just because you have a Celiac gene does not mean you will get Celiac disease. About 30% of people carry at least 1 gene for Celiac.

 

True - but that's not what I meant.  Coupled with the symptoms I would say Celiac is a safe bet if one of the kids also presents with Celiac.  But you do bring up an important distinction - having a child with Celiac does not mean either parent necessarily has it.  It just means that at least one parent carries the gene(s) for it.