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Could I Have Celiac?


*lee-lee*

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*lee-lee* Enthusiast

hi everyone - i just found this board today and spent most of my day at work reading! i am 27/f and am awaiting the results from my blood work to find out if i have Celiac. i have a few questions that i'm hoping you all can shed some light on - i'll try and be as clear as possible but i've got a zillion thoughts running through my head these days!

here's my history:

my grandmother has celiac disease (honestly not sure how long she's had it...i'd say more than 5 years, if i had to guess). i've been having symptoms for a few months now but have ignored them or attributed them to stress/anxiety/etc. the stomach cramps, diarrhea and general urge to run to the bathroom got too be too much to take so i finally went to see a GP on Friday.

the nurse did her thing and informed me i had a low grade fever (100.3) and my BP was a little high (122 over 91) - both which are very odd for me. the visit was quick as the doctor was running behind so i mentioned the Celiac history in my family and my symptoms and she sent me for blood work. (She also wants me to provide stool samples but i'll get to that in a minute...) I should have the results in about a week. she also did a brief rectal exam but didn't find anything out of the ordinary.

oh and i'm always always always tired. i don't feel rested unless i get at least 10 hrs of sleep each night. and i've been fighting trochantaric bursitis for 10 months now. i've never really thought that's what it was but that was the only diagnosis i could get. feels like joint pain in my hips that will radiate down my legs. it's subsided quite a bit in recent months but flares up once in a while now.

i'm confused as to why i can eat certain food sometimes and i'm not affected at all. but other times it's nearly immediate. is this common in Celiac or could i have something else? Also i've gained weight in the last 6 months - not a ton but i definitely notice it and i would say i'm considered overweight. I was also very active in high school with sports and was thin/average weight as a result but not so much anymore. i've read that some people gain weight prior to diagnosis but it doesn't seem all too common.

i have a billion and one questions for my doctor and i was a bit frazzled after my appointment on Friday. she and the nurse pretty much tossed the stool sample containers and some general instructions at me in the hallway on my way out. i'm now wondering what they're testing for in the stools...the paper says Stool Culture & Sensitivity (C&S) and Ova & Parasites (O&P) - does this mean she thinks i have a "bug" or something? I really don't want to do the stool samples (because who would??) if the blood work is just going to show Celiac. in total i have to give 4 samples, on 3 consecutive days. i know i'm complaining but it's so inconvenient - i work full time in an office and it's just not an option to collect a sample during the day. i have a follow up appt in 3 weeks so i think i'm just going to wait and see what the blood shows and hear what the doctor has to say. i'll have a list of questions so i don't forget to ask anything.

are there any more tests that have to be performed if the blood comes back positive for Celiac? it's exhausting to fight the feeling of being sick after i eat so i'm trying to be more conscious of my gluten intake but i don't want to skew any tests i may need in the near future.

thanks for listening and i appreciate any info/insight anyone can give me! (i'm sure i'll have more questions...i just can't think of anything else right now.)


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RiceGuy Collaborator

The first thing that I'd suggest is a magnesium supplement. Many including myself find it to be very helpful for muscle/nerve pain issues, and so much more. Also, it would probably be a good idea to start taking a sublingual methylcobalamin (B12) supplement, as it is also very important for nerve health, among other things. These two nutrients should also help with energy levels, sleep patterns, complexion, mood, and lots more.

Yes, a certain percentage of Celiac sufferers do gain weight, so you're not alone there. As for your seemingly inconsistent reactions, that might well be the case, but I'm thinking that there could be a delayed reaction. Also, consider food combinations. Since dairy is often a problem for celiacs, especially at first, you may be having some problems with that, and when combined with gluten it might be what makes symptoms more pronounced. Also, many on this board find that in addition to gluten, they need to avoid other common allergens, such as soy, corn, eggs, nuts, nightshades, etc.

Although I never bothered with any testing, many feel that they want to have an "official" diagnosis. Usually this comes down to a biopsy, but unfortunately, it is hit and miss. It often comes back negative, even when blood work is positive and dietary response is overwhelming.

So no matter what the results of tests turn out to be, it is always a good idea to try the gluten-free diet and see how you feel. The diet is actually the best test there is.

I hope you get all the answers you need, and this board is a great place to get them! The members here are incredibly helpful and knowledgeable.

Welcome to the board!

*lee-lee* Enthusiast

thanks RiceGuy - you mentioned complexion....i've had the worst time with acne in the past 7-8 months but would have never put the two together. it's like i'm 14 years old all over again! I never had acne growing up so it's quite a shock. i'll check out those supplements and hopefully my skin will improve - along with everything else.

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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