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

Difference Between Self Diag And Actual Biopisy Confirmation

ruca55

Recommended Posts

ruca55 Apprentice
ruca55
Posted

Hello Everyone-

Glad to have found this site. Like everyone else I'm sure, my story is a long one but I'll cut to the chase. I was like a dog chasing my tail trying to discover the cause of my headaches for the last 4 years. (Ever since the birth of my daughter and second c-section) Fast forward to last month, I was told I had to have my gallbladder removed. The thought of surgery scared the daylights out of me, so I started to do some research. I kept coming up with A LOT of symptoms that matched celiac. Anyway the surgery was unavoidable, but I discovered after that food is still causing an issue for me. I have an appt with a GI, but not until next week and who knows how long it will take to have an endo scheduled. I know your not supposed to cut gluten out until your test, but how can I keen eating something that I know is making me feel terrible? I've actually also cut out dairy (and all animal products) as well as caffeine since my surgery. Minutes after consuming gluten I have headache, nausea among other things. I've been eating a bowl of cereal every night to try to keep gluten in my diet, but it's probably not enough for a positive biopsy?

So... my question is

What is the difference between having a confirmation that you do have celiac vs. self diag. At this point I am sure it's either intolerance or celiac, so the end result is the same. I will go on a gluten free diet. I guess my concern is other areas of health, I've been told my kidneys are enlarged (among other medical problems) which I assume is all related to celiac.

Any input would be greatly appreciated.

Thanks

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

Celiac.com Sponsor (A8-M):


lynnelise Apprentice
lynnelise
Posted

The treatment is the same either way. gluten-free diet. However having an actual diagnoses could make things a bit easier. I do not have a "real" diagnoses because I had an EGD a month before to look for an ulcer and they saw inflammation but didn't biopsy. I couldn't afford to have the procedure redone so I just started the diet. The only issue I've had with this is that I cannot get certain vitamin levels checked because my insurance needs some sort of proof that there is a reason I could be deficient before it will pay. Other people find it hard to remain on the diet if they don't have a true diagnoses so if you think that you will get frustrated on the diet and waver then by all means wait and get the testing! Also consider that some people have had negative tests but still saw great improvement on the diet.

Greentealady Rookie
Greentealady
Posted

Hi, I can totally understand where you are coming from. I have struggled like all of you for so many years with no answers or shall I say the wrong answers. I am 46 and when I was 26 I was DX with psoriatic arthritis. This is an autoimmune disease, I had to go through mega dr.'s before this was dx. I had lots of inflammation at the time. I mimed lost 50 lbs and thankfully most of my symptoms of the arthritis diminished. As far back as I can remember I have been bloaty, gassy, constipation with alternating diarrhea, stomach cramps and a gurgle stomach. I had a few episodes a while back and was actually throwing up, went to the er twice and was sent home told I had IBS. 2 weeks later my appendix almost burst and I have to have two surgeries. I still think that was the reason for the episodes and they missed it in the er. Over the last two yrs my gurgle and bloating and constipation has gotten worse, sadly it is something you just start to view as normal. After being fed up one day I started some research and found the info on celiacs. Immed I got excited and went to the store and started in on a gluten-free and Dairy free diet. I know I should have waited and got tested but I have little faith in the medical system and wanted to feel better asap. I knew I had an autoimmune problem and I have a lot of the symptoms so I just went for it. I am in general a very good eater, mostly veggies and organic everything so it was not a sure hard change for me. I did start to feel better :-) BUT then I would have a day or two where my stomach would kinda hurt and I would be constipated, never earth shattering but a little uncomfy. I still have a gurgle stomach almost every time after I eat but not the cramping just the gurgle. I am sure I am still not 100% gluten-free and Dairy free as I am still learning so that could be the issue with a few set backs OR I could be completely wrong and I am not even close to celiacs. I know the test is not 100% so I am not sure if I should eat the gluten then take it or just keep doing what I am doing. Does it take a while to not have symptoms? Does anyone else still have issues once gluten-free? I have been doing this about one month now.

I can feel your situation and am right there with you. Let's ponder this one together :-)

domesticactivist Collaborator
domesticactivist
Posted

I think the main difference is how seriously people take you. If you have an actual diagnosis, insurance may be harder to get, but once you have it, they'll cover more. If you have to deal with getting accommodations at school, work, or in other situations, an actual diagnosis will make all the difference. It's also effective in shutting down people's "a little bit won't hurt" pressure if you can show them medical proof.

If you don't care what other people think and are able to take care of yourself in work/school/event/dealing with doctor situations, then I don't think the diagnosis by endo matters much.

Personally, we decided the the trauma of another procedure and the risks associated with putting our son back on a gluten diet were too high and not worth it. However, we're homeschoolers and don't have to deal with getting a reluctant school to make accommodations. I've been able to advocate successfully in other situations so far.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,178
    • Most Online (within 30 mins)
      7,748
    Cind
    Newest Member
    Cind
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • 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...