Jump to content

  • 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

2 Doctors, 2 Diagnosis

gibbscmc

Recommended Posts

gibbscmc Newbie
gibbscmc
Posted

I have been sick with chronic diarrhea for 2 months now every single day. Colonoscopy was clear, so my family dr. scheduled an appt. with a GI. Thurs. of last week while at my family dr., he said they had finally found something in my blood work (after checking for giardia, salmonella, and about 30 other things). He said I had an antibody that caused an allergic reaction to gluten and what I had was called, "celiac disease" or "celiac sprue". I was actually relieved to finally have some answers and willing to do whatever needed to get better. Today I saw the GI and he said, "I don't think you have celiac." I have no idea which test was done, I do know it was a blood test, but the results were ">6". He said that was not celiac disease. I asked where my family dr. came up with his info then? I am SOOO CONFUSED. The GI says IBS, most likely, but I am not willing to begin taking up to 3 meds every day if he is not SURE that it is not celiac and could be fixed with a gluten free diet. No additional labs or tests were ordered. I am going to my family dr. tomorrow morning and picking up a copy of the labs for myself. Should I see a different GI? After reading the celiac symptoms (which I had never heard of before), so many things from my life over the past 5 years made SOOO much sense and I was so encouraged about this gluten free diet making my life so much better. HELP!!

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

Celiac.com Sponsor (A8-M):


Generic Apprentice
Generic
Posted

Just to let you know, IBS is litterally just a grouping of symptoms. In other words it means there is something wrong with your stomach, but I don't know what it is.

Give the gluten free diet a go, if you feel better you have your answer.

mouth Enthusiast
mouth
Posted
I have been sick with chronic diarrhea for 2 months now every single day. Colonoscopy was clear, so my family dr. scheduled an appt. with a GI. Thurs. of last week while at my family dr., he said they had finally found something in my blood work (after checking for giardia, salmonella, and about 30 other things). He said I had an antibody that caused an allergic reaction to gluten and what I had was called, "celiac disease" or "celiac sprue". I was actually relieved to finally have some answers and willing to do whatever needed to get better. Today I saw the GI and he said, "I don't think you have celiac." I have no idea which test was done, I do know it was a blood test, but the results were ">6". He said that was not celiac disease. I asked where my family dr. came up with his info then? I am SOOO CONFUSED. The GI says IBS, most likely, but I am not willing to begin taking up to 3 meds every day if he is not SURE that it is not celiac and could be fixed with a gluten free diet. No additional labs or tests were ordered. I am going to my family dr. tomorrow morning and picking up a copy of the labs for myself. Should I see a different GI? After reading the celiac symptoms (which I had never heard of before), so many things from my life over the past 5 years made SOOO much sense and I was so encouraged about this gluten free diet making my life so much better. HELP!!

Hi, sound to me like you have a smart MD. I would go to another GI. Who do you know longer? Which Dr do you trust more? What does your gut tell you? But, if you plan to go to another GI, DON'T GO GLUTEN FREE. OR the tests wont come out right. I know one test is called tTg. I am not sure of the others..

Good luck. Lynn

lonewolf Collaborator
lonewolf
Posted

Find a new GI or just try the gluten-free diet. The GI you went to is not good. IBS should stand for "I Be Stumped" (on behalf of the doctor). It is a non-diagnosis. Medications won't help and neither will the diet they recommend. I was diagnosed with colitis and IBS, and first told to eat a low fiber diet, heavy on things like cream of wheat and white bread. Then I was told, no, eat a high fiber diet - lots of bran, vegies, etc. Both made me sicker. I only got better when I eliminated gluten, dairy, eggs and soy.

CMCM Rising Star
CMCM
Posted

Unless the doctors you are working with really KNOW about celiac disease, they're going to have a tough time diagnosing it. My suggestion is to try a gluten AND dairy free diet for awhile and see how you feel. You should get relief fairly quickly....within one to three weeks if you are lucky. If the diet really improves things, tell your doctor(s). And find someone who is knowledgeable about celiac disease and gluten sensitivity.

Remember that a person with gluten sensitivity (and no celiac gene) can get just as sick as someone with celiac disease.

Archived

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

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


  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748
    CRae
    Newest Member
    CRae
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.