Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Should I Be Tested?


kdickinson

Recommended Posts

kdickinson Rookie

Alright, so here's my story. My name is Kyle, I'm 24, 5'3", shortest guy in my family by about 5" and I think I may have celiac disease/gluten sensitivity. (Not real sure of the difference) Anywho, here's what's up.(This may get a bit nasty, I do apologise)

I have had these bouts with heart palpitations for years now, more recently, last couple of years, they've gotten worse. I can go months without having any, but then boom, I have over 5,000 in a day(literally, wore a holter monitor, doc said they were just Pvcs and pacs. Stinkin annoying though.) I've had prostate problems, colon problems, I've had polyps, hemmroids, blood in me stools, generally pretty fatigued, not severe or anything, but I just don't seem to have the energy of other people my age. Also I've had ADD since I was a child, used to have OCD, but has mostly cleared up. And here lately no matter what I eat I always just get to feeling sick, overly full, and just not good, like I used to. I mean I will enjoy the food, but I always feel drained and crappy afterwards, no matter what it is. not a pleasent experience for someone who likes food as much as I! Also I have... anal seepage problems. I've had it since I can remember. Never told anyone about it because it's so darn embarrasing, but nothing I do seems to make it better. Sorry about that. Also, when it comes to short term memory. I am the WORST in the world. I can't remember anything. I know that sounds random, but I've seen it before crop up as symptoms.

ANYWHO. From january to febeuary, I went on this Daniel Fast thing with my church, which is where you pretty much just eat fruits and veggies, no processed food, and very minimal cooking. Needless to say I felt SO good during that time, more than I have in a LONG time, and ever since that time, it seems as though it's gotten worse when I do eat regular food. I've never had anemia, and my family thinks I'm a hypocondriac for "having" all this stuff at such a young age. Which I would TOTALLY agree with, other than the fact that I in fact have had all the stuff listed above. So I'm hesitant to get tested, when I don't have any "Severe, or classic" signs, because that would be one more thing to add to their list.

What do you guys think?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

I think you have found the right place and you should be very hopeful about your future health! All of the things you describe are very, very common for those with Celiac/Gluten Intolerance. It is really horrifying when your own family thinks you are hypochondriac. I was there too. Nevermind what people say. You need to find out what is going on with your health and I think you figured out a big key-Gluten makes you sick. Now you have to decide if you want the testing which is not always accurate. You could ask your Dr. to do the full Celiac panel if you are still eating gluten that is. If you are not eating gluten up until the time of testing you will test negative. Many of us were not able to get diagnosed through testing or chose not to. It is totally up to you. You could try for the blood testing and endoscopy if you feel you need a firm diagnosis. Malabsorption issues can also be detected through vitamin level blood tests. It is very common for us to be deficient in A E D K, iron, zinc, magnesium, calcium, all the B vitamins, folate and B 12. Thyroid problems are very common too.

You certainly have enough symptoms to warrant either getting tested or giving the diet a good strict try for several months. However, it is very difficult to go back on gluten once you have gone off of it. Should you decide to be tested in the future it could be a brutal 2 months of eating the equivalent of 3 to 4 slices of bread a day and then you still may not get a positive. Some people are Gluten intolerant and will never test positive. Yet they are as symptomatic as a person with the diagnosis of Celiac disease.

Welcome to the forum. I'm sure you get some other answers to help you make your decision, but in the end it is up to you and the good thing is you don't have to have a prescription to eat gluten free. There are several threads recently on here where people are struggling with the same decision. You may find them helpful to read through. I decided the result would be the same if I tested or if I didn't. I cannot eat Gluten without getting very sick. I hope this is the end of your long struggle to find out what is going on with your body. Take care and I hope you feel great really soon!

ravenwoodglass Mentor

Welcome to the board. The previous poster gave such good advice I really don't have much to add. If you do decide to get tested give yourself a good 2 months back on gluten before you test but be prepared for a false negative. When your done with testing do give the diet a good strict try for a bit and see if it helps.

mushroom Proficient

Well, I would say you do have classic signs of gluten intolerance. If you have been back on gluten for a month, you would need to do another month of gluten eating before you would likely test positive. But even then, as eatmeat says, it is possible to test negative for celiac if you are in fact non-celiac gluten intolerant :( , meaning that you have all the same symptoms but don't get the diagnosis. :o And you also have to decide who the diagnosis is for, you or your family? If your sole goal is to get better than you can go gluten free right now and forget about the testing. If you have to convince family of the legitimacy of your symptoms you might want to try for the diagnosis. But I think if I were you I wouldn't tell them about it unless it were positive, otherwise you would just give them more ammunition :rolleyes:

Oh, and when you get the nutrient testing done, include Vitamin D for sure; this is the one that is important to prevent osteoporosis.

kdickinson Rookie

Thanks for the replies. I have an appointment scheduled for next week with a general sergeon in town about a colonoscopy I'm due for.(closest GI is hour and a half away) But he does testing and stuff, and colonoscopies and endoscopies. I'm gonna talk to him about getting tested, and see the timeframe.. I mean I have been eating regular ol' food since the end of January, so I'm definitely go for testing. I'm just ready to give this a whirl, cuz this gut pain is getting annoying. And getting worse. So we'll see.

txplowgirl Enthusiast

Make sure you get the endoscopy, the colonosopy can't diagnose Celiac.

kdickinson Rookie

Ok I've got a dilemma. I could get into the general surgeon on thursday, here in town, or wait till next Tuesday and get into the GI in the city about an hour away. What would you guys recommend? I wanna get it over with, but I want a doc I can trust. Have any of you guys had experience with general surgeons that do endoscopies? And how were they?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



eatmeat4good Enthusiast

You might want to start a new post for this question if you still need an answer. I don't know what I would do as I have no experience with either kind of Dr.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,175
    • Most Online (within 30 mins)
      7,748

    Janice Emmendorfer
    Newest Member
    Janice Emmendorfer
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
×
×
  • Create New...