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

Not Sure Where To Start?

KellyN.

Recommended Posts

KellyN. Newbie
KellyN.
Posted

Hi! Recently, after seeing my GP a few times for stomach pain, she casually mentioned that I may want to consider following a gluten free diet. She explained that the symptoms I was explaining to her sounded as if they could be related to a "Gluten intolerance" and then left it at that. Upon going home and reading up on Celiac/Gluten intolerance I would have to agree that my symptoms do sound like some that are listed in relations with this disease. But, I don't know where to go now. She mentioned it so casually and did not offer any further testing and as I read about all of this it seems like a serious condition that needs specific attention and diagnosis.

What type of doctor should I see?

My other confusion is that I do not have all of the symptoms listed in relation the Celiac. What I have been experiencing is:

*Burning in the stomach

*Widespread stomach pain

*Feeling extremely bloated at times

*Feeling extremely gassy

*Feeling constipated (although I'm not)

*Unexplained weight loss (in the last 8 months. Although we did bring our daughter home 8 months ago, so that may explain it!)

*Unexplained Infertility for 5+ years (we adopted our daughter. I've never conceived)

*Fatigue (sometimes extreme)

*Joint pain (this is a toss up. It is not extreme, but its there in my hips especially at times and it seems wrong to have joint pains at 26 years old IMO)

I don't know if those symptoms are specific enough to determine Celiac or not. I just know know where to go next. Any advice would be greatly appreciated!

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

Celiac.com Sponsor (A8-M):


Cara in Boston Enthusiast
Cara in Boston
Posted

I'm pretty new at this and there are many on this list who are far more knowledgable. I'm sure you will get lots of good advice.

Your symptoms sound very much like you could be gluten intolerant and/or have celiac disease. You may find that after going on a strict gluten-free diet you feel much, much better.

But once you go on the diet, most of the tests available for celiac disease will no longer be accurate. You should get tested BEFORE you change your diet. The first step for testing is a panel of blood tests that your primary doctor can request. If any of your results are out of range, you can then go to a Gastroenterologist for additional tests, including an endoscopy.

The confusing part is that you can test negative on everything and STILL have it. The final test is changing your diet and seeing if your symptoms resolve. You can also be gluten sensitive or intolerant and NOT have celiac disease, but there is no test for this other than the diet.

I would recommend you at least give the tests a shot. If your doctor can determine that you indeed have celiac disease, you will be more likely to take the diet seriously. You will know that you have an autoimmune disorder that can be related to other conditions that you should be screened for if symptoms arise. You will need to let your family know so they can get tested (all first degree relatives should be screened.)

Just tell your doctor you want to try the diet but you would like to rule out celiac disease with testing while you are still consuming gluten. Make sure she knows which blood tests to order (my sister's doctor only did one and that was not sufficient).

From my experience so far, the testing process can be long, confusing, and frustrating. If you don't get actual answers, don't give up. You can try the diet and you will be surprised that it is not as difficult as it seems at first.

Welcome and good luck.

Cara

KellyN. Newbie
KellyN.
Posted
  • Author

I'm pretty new at this and there are many on this list who are far more knowledgable. I'm sure you will get lots of good advice.

Your symptoms sound very much like you could be gluten intolerant and/or have celiac disease. You may find that after going on a strict gluten-free diet you feel much, much better.

But once you go on the diet, most of the tests available for celiac disease will no longer be accurate. You should get tested BEFORE you change your diet. The first step for testing is a panel of blood tests that your primary doctor can request. If any of your results are out of range, you can then go to a Gastroenterologist for additional tests, including an endoscopy.

The confusing part is that you can test negative on everything and STILL have it. The final test is changing your diet and seeing if your symptoms resolve. You can also be gluten sensitive or intolerant and NOT have celiac disease, but there is no test for this other than the diet.

I would recommend you at least give the tests a shot. If your doctor can determine that you indeed have celiac disease, you will be more likely to take the diet seriously. You will know that you have an autoimmune disorder that can be related to other conditions that you should be screened for if symptoms arise. You will need to let your family know so they can get tested (all first degree relatives should be screened.)

Just tell your doctor you want to try the diet but you would like to rule out celiac disease with testing while you are still consuming gluten. Make sure she knows which blood tests to order (my sister's doctor only did one and that was not sufficient).

From my experience so far, the testing process can be long, confusing, and frustrating. If you don't get actual answers, don't give up. You can try the diet and you will be surprised that it is not as difficult as it seems at first.

Welcome and good luck.

Cara

Thanks for your response! I agree that I need to be tested prior to starting the diet. I'm actually a little perturbed that my GP didn't suggest the same, but I called the office today and scheduled the blood work for next week. I am however anxious to start the diet because I'm so sick of feeling this way and I would love some relief!! But, just knowing there may be some relief in sight is relieving... if that makes sense. :P

I saw someone else asked what tests they needed to have and someone suggested these:

Deamidated Gliadin Abs, IgG

Deamidated Gliadin Abs, IgA

t-Transglutaminase (tTG) IgA

t-Transglutaminase (tTG) IgG

Endomysial Antibody IgA

Immunoglubulin A

Am I missing anything?

Archived

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

Go to topic listing
  • 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
      Testing

      By Wheatwacked · Posted

      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
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Ryangf · Posted

      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
      I’m so confused…

      By Scott Adams · Posted

      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
      I’m so confused…

      By knitty kitty · Posted

      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...