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Help! Have Had Stomach Issues For Years,now Maybe Think It Could Be Celiac?

pre-diagnosis symptoms tests new patient advice help

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7 replies to this topic

#1 kehoban

 
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Posted 29 January 2013 - 11:02 AM

Hello! I am a 19 year old girl who has been dealing with stomach issues for years. However, recently it has seemed to get worse. I have always thought I had a little bit of lactose intolerance, so I stay away from milk usually and take lactaid when i do. I started adderall at the beginning of the summer, but this has been for years. I have always had frequent bowel movements, but in the past two years it has gotten worse. I must go to the bathroom within 10 minutes of eating. I often pass just small stools, usually with mucus or just small fatty stools. I have lost about 30 pounds in a year or so, and have little appetite. I do not know if that is from medicine or something else, as it started before the medicine. I have always had "brain fog" often forgetting what i am saying half way through a sentence, and forgetting things short term VERY often. I have diarrhea alternating with constipation, and can sit on the toilet for a while before even producing a tiny stool. I have always been very fatigued, blaming it on being a college student, but it gets to the point where i dont want to do anything. I am on zoloft for anxiety and depression, and this is not helping. I spend all day on the toilet or waiting to see if I need to use the bathroom. I also urinate VERY often and have issues sleeping or doing anything if I have not immediately before used the bathroom. Please help and let me know if anyone thinks this looks like celiac! I now can eat pretty much anything and not gain weight, but have little appetite usually. My stomach constantly gurgles and rumbles, as well as constantly having small mouth sores for a large part of my life. My menstrual periods are irregular lately, and it is just all over really not fun. Please help me stop this.
symtpoms-
mucus/liquidy stool or diarrhea alternating with constipation
frequent small bowel movements and urination
30 pounds weight loss no reason
no appetite
depression
irregular menstrual periods
rumbling of stomach
mouth sores
lactose intolerance
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#2 beachbirdie

 
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Posted 29 January 2013 - 03:02 PM

Hi Kehoban...welcome to the forum!

Short answer to all your concers...yes, you have a lot of signs that *could* point to celiac. Have you had a good, thorough check-up recently? You should get one that includes all the basic blood tests (metabolic panel, electolytes, vitamin D, Vitamin B12), Complete Blood Count. Make sure they test your TSH, Free T4 and Free T3.

Then, you should specifically ask for some specific celiac tests:

Deamidated Gliadin Antibodies (both IgG and IgA)

anti-Endomysial Antibodies (anti-EMA)

Tissue Transglutaminase (both IgA and IgG, also written as "TtG IgG and TtG IgA")

Total serum IgA (many people are deficient in serum IgA, which renders the IgA versions of the above tests invalid.)


My daughter (age 26 now) had tummy troubles for a long time...I should have clued in when she was younger and was passing almost white-colored stools! She thought she was dairy intolerant because she got so sick after eating pizza and macaroni and cheese. Well, turns out she is gluten-intolerant.

Good luck.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#3 Madagascar

 
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Posted 29 January 2013 - 05:48 PM

oh it sure sounds like it - getting those tests is a great idea. don't go gluten-free before your blood tests, but then you could start a gluten-free diet.

just so you know - anxiety, depression and insomnia can all be related. if a person has damage to their small intestine, nutrient absorption can be hindered, even if you are taking vitamins. my understanding is that the small intestines produce a lot of our seratonin (feel happy hormones) and if you are lacking in tryptophans because of malabsorption, you might have insomnia. anxiety seems to be part of the package deal.

i had a zillion canker sores when i was young, my youngest daughter is your age and she always had a lot of them. gut problems are what we all of think of as related to celiac disease, but neurological symptoms are common as well. here is a link that's got some good info, including the studies that they used in the presentation:

http://www.mybrainhe..._Feb_8_2011.pdf

if you are interested in researching, one way to come up with the actual studies is to google "pubmed+celiac+ whatever symptom you're curious about." PubMed is the publisher of all the medical studies. They can be hard to read if you don't have a science background, but there is a lot of good info out there. For example, if you want to research to see if the depression is linked, google "pubmed+celiac+depression."

I'll just give you the quick version of my daughter's story. She had canker sores and bad teeth growing up - lots of cavities. She had trouble following more than one direction at a time and even now can't remember childhood events. She's had a constant low level of anxiety since maybe 14 or 15. At about 17 she started developing diarrhea from various foods. She tested allergic to a number of foods so avoided those (while eating in the university food service and being vegetarian and picky as well.) Over the next 2 years she kept having reactions to more and more foods: peanuts, almonds, tomatoes, peppers, soy, strawberries, raspberries, kiwi . . . the list kept growing. the school doc prescribed an EpiPen for her after the kiwi reaction - it just took minutes for her mouth to begin swelling. Last fall she had a major relationship upset and she started posting conspiracy theories on facebook - like 20 posts a day. I thought she was developing schizophrenia, because it runs in my family.

A friend recommended I talk to a celiac specialist - I did, and she said that she has seen people with untreated celiac disease "look" like they have schizophrenia and she has seen it resolve upon a gluten-free diet. My daughter met with her and has now been gluten-free for about 2.5 months. Her mental state immediately improved - seriously - after 4 days I could see the difference. I wouldn't say she's 100% mentally, but her stomach issues have mostly resolved and her mental condition has definitely improved.

She chose not to get tested, but if you want the univ cafeteria to provide you with gluten-free food under the ADA, you will need a diagnosis. She just went gluten-free and never has looked back.

Consider if you think you will need an official diagnosis. If you might, get tested. If you can't see any reason for needing the official diagnosis (and there are some mistakes made with testing), just give yourself a gluten-free trial and see how you do. If your problems resolve, you've got your answer. if they get a lot better but not completely resolve, then you can explore further.

From your description, life is pretty much hell for you right now and you've got nothing left to lose. I will add that I almost would've written the exact same post as yours when i was in college too. I had to get up from the table every time i ate to head for the dorm bathroom - which is a special kind of fun, as you know. i only just got diagnosed in november - so even though this is awful, at least you have a possibility of figuring out what's wrong now while you are young and preventing any damage to your body from auto-immune diseases in the future.

Best of luck to you!!
  • 0
Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.

#4 Madagascar

 
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Posted 29 January 2013 - 05:56 PM

oh, btw, if you're not using digestive enzymes, you might try those right away. they won't affect any testing, but will likely help your digestion immediately. I use the Enzymedica Digest Basic (take one every time i eat), the Schiff Digestive Advantage Lactose Therapy (take 1-2 per day - for me, these work better than Lactaid taken with milk) and Accuflora (i take 1/2-1 of these when i have ice cream.)

Between all of these, my food issues got under control in spite of me eating gluten for the past 35 years. All of those supplements I mentioned above are available over the counter and would be harmless with the meds you are taking.
  • 0
Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.

#5 GFinDC

 
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Posted 30 January 2013 - 08:39 AM

thanks for all the info Madagscar, nice post! :)

.....

Consider if you think you will need an official diagnosis. If you might, get tested. If you can't see any reason for needing the official diagnosis (and there are some mistakes made with testing), just give yourself a gluten-free trial and see how you do. If your problems resolve, you've got your answer. if they get a lot better but not completely resolve, then you can explore further.
....

Best of luck to you!!


One little nit pick, and just to clarify, if there is a change from stopping eating gluten, then it is probably because gluten is causing a reaction. Even if the symptoms don't resolve completely, a change means something is going on. People with no reaction to gluten shouldn't have any change when they stop eating it. You are right though, that they may find additional food intolerances beyond gluten. I think that's what you meant anyway. If the symptoms improve, they should keep going on the gluten-free diet, but may find more food intolerances or other issues. Or they may just need more time gluten-free for their system to adjust and heal for that matter. For some of us it take quite a while to get better.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#6 Madagascar

 
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Posted 30 January 2013 - 06:48 PM

yes, thanks for clarifying that. i meant there might be other food intolerances, or something else could be going on. i just read a study this week about people who hadn't completely cleared up with a gluten-free diet.

ok, here's the study - they can say it better and more accurately than me trying to tell about it. http://www.ncbi.nlm....les/PMC3319961/
  • 0
Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.

#7 DonnaMM

 
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Posted 31 January 2013 - 06:13 AM

Please be sure to also be checked for IBD, especially ulcerative colitis. You are at that age
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Hodgkins Lymphoma-2006 at age 18, now 25
Disagnosed with IBS and anxiety (related to my treatment they say)-2007
Allergies to corn, tree nuts, shellfish, bees- 2010
Positive Lupus Anticoagulant-2011
Erosive esophagitis-2011
Severe iron deficiency anemia- 2012
Inappropriate sinus tachycardia-2013
Tested for celiac three times, blood and biopsies all negative
Now encouraged to undergo testing again due to malabsorption

#8 GFinDC

 
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Posted 31 January 2013 - 06:32 AM

yes, thanks for clarifying that. i meant there might be other food intolerances, or something else could be going on. i just read a study this week about people who hadn't completely cleared up with a gluten-free diet.

ok, here's the study - they can say it better and more accurately than me trying to tell about it. http://www.ncbi.nlm....les/PMC3319961/


Thanks Madagascar

That's an interesting study. It's surprising to me how many of their subjects complained the gluten-free diet wasn't working for them, but in reality they weren't following it! Or not following it correctly, letting a little gluten slip in here and there. Or some were just outright eating gluten. People are funny sometimes.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul





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