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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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      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
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