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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


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

Maybe I Am Just Crazy?!?


cblack

Recommended Posts

cblack Apprentice

I hope someone on this forum can help me. I just got the results back from small bowel biopsy and blood work yesterday. GI reports that both were negative and he doesn't believe I have celiac. I'm beyond frustrated at this point. For 13 years, I have had a dull ache in left side of stomach, intermittent diarrhea/constipation, gas, bloating, chronic fatigue, tingling/numbness in hands and feet, and acid reflux. I have a history of canker sores and anemia. My immediate first degree relative history is Type I diabetes (sister), seizures (mother & brother), and mother died of stomach cancer. After numerous doctors and tests over the last 13 years, nothing has ever been diagnosed, other than depression and stress. I have been rx'd anti-depressants and sleeping pills more times than I can count. And treated like it's all in my head more times than I can count as well. I finally gave up and decided that I was just going to have to live with this not feeling well. Three months ago during routine blood work by my gynecologist, my liver enzyme panel came back elevated. In researching possible causes, I came across celiac disease and as the saying goes, "the light bulb came on". I felt like I had finally found the cause for all my vague symptoms. Finding a doctor to test for it became a lesson in futility. I took the Prometheus test and tested positive for the DQ2 and DQ8 genes. I also did the Enterolab test and tested positive for IgA. A week ago, after much frustration, I finally found a GI that did the endoscopy and blood work based off of those tests. Yesterday, he told me that I was not celiac, that yes, I do have the genes, but "so does 30-40% of the population" and that "doesn't mean anything". He didn't have an explanation as to why I am having these symptoms, just said that I definitely don't have celiac disease. As far as the Enterolab test, he says fecal testing just isn't done, and he's not comfortable with it. He did say that I was deficient in Vitamin D and should start a supplement. He ended the conversation with, "thank you and it was nice meeting you". Immediately after the endoscopy, I went gluten free and do feel better. The bloating, gas, and acid reflux is diminishing. The dull stomach ache is still there intermittently, but seems to be improving. My stools still aren't what I would call normal, but better than they were. But I've only been gluten free for 5 days. I apologize for the length of this message, I'm just still feeling so confused and really thought I had found the answer. Can someone explain the difference between celiac disease and gluten intolerant? Am I gluten intolerant? Is it one in the same? I just don't know what to think!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Little Northern Bakehouse
Lakefront Brewery



Celiac.com Sponsor (A8-M):
Little Northern Bakehouse


AlysounRI Contributor

Hiya:

I am in a bit of the same boat as you, and no, you are not crazy.

I am still trying to find out my blood test result levels but my biopsy seems normal.

Here is how I see it.

You can be gluten intolerant and not have celiac disease.

If you are celiac disease, have an extreme form of gluten intolerance.

But you don't have to have celiac disease to be gluten intolerant.

Like you, after years of IBS, problems with anemia, lactose intolerance, and general malaise, I had some blood tests and my liver levels came back elevated. I started reading about celiac disease. A naturapath about 7 years ago had suggested that I give up wheat because of my IBS and because wheat is a very inflammatory thing for some people (you and I most definitely!).

I did give up wheat but I fell off the wagon. I felt okay but I was still eating lots of ryevita and still having IBS attacks, achy all over, dull headaches, not as much energy, etc. Fast forward to 7 years and I am miserable beyond belief again and thinking I need to give up wheat again but this time I will take it a step further and I would give up all gluten and oats and see that happened.

Success. My three week experiment started to work wonders. I had never felt so incredibly good in my whole life!!

So I decided to be tested, went back onto the poison in order to be tested. I was miserable and everyone remarked on how tired I looked and the dark circles under my eyes. I was tested and, at least, the biopsy came up negative.

For some people, gluten, wheat being the main offender in the western world(!!) is just toxic to our systems. Then again there are lots of false negatives in testing, and the six samples they take in the endoscopy are from 30 feet of small intestine and your damage may be patchy. It doesn't seem to be an exact science.

My lesson in this little ODDyssey is this: if you tested negative for celiac, don't worry. If you feel better going gluten-free (and I know I do!!), then keep to it. YOU know YOUR body best. Gluten is just toxic to some people, even if you don't have celiac, that is very important to remember.

If you want a mind blowing book to show you just how toxic find a copy of Healthier without wheat: A New Understanding of Wheat Allergies, Celiac Disease, and Non-Celiac Gluten Intolerance / by Spephen Wangen, 2009. It covers not only celiac but gluten intolerance.

If you want to send me a message, and ask more questions, feel free to do this. But I do know what you are going through with your seemingly negative result. It's a confusing experience, I know, I really do know.

Just take a deep breath, and stay on the gluten-free diet as best as you can. You will continue to feel better. And take that vit. D!! That is incredibly important.

But if you want to send me a message of list, please do so, okay.

Hugs,

~Allison

Terrified Mom Newbie

I'm new to this whole celiac thing, so can't really offer any advice there, but as for Vit D, the best way to get your levels up is good ole sunshine. Without sunscreen. With digestive issues taking a supplement isn't going to help a whole lot, and it is possible to overdose on D, but your skin will never make too much. You can make Vit D in a tanning bed as well. The sun is not the big cancer causing evil sphere it's been made out to be in recent decades. Skin cancer rates have actually gone UP since it was demonized! Decades ago skin cancer was known as "the secretary's disease" because it was people who were locked inside all day that got it, not those who were outside in the sunshine! Just thought I'd share that in case the sun worried you. :D

RollingAlong Explorer

My spouse's experiences were similar. Sister with ulcerative colitis, cancer in the family tree, all his blood tests and biopsy negative.

He GI said "eat what you tolerate." 3 little words. no diagnosis. Positive response to a gluten-free diet.

Statistically, it is possible that you are reacting to casein and soy as well. Be on the lookout for additional food intolerances.

Archived

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


  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse



  • Member Statistics

    • Total Members
      130,282
    • Most Online (within 30 mins)
      7,748

    Neup
    Newest Member
    Neup
    Joined

  • Celiac.com Sponsor (A20):
    Authentic Foods


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX



  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):
    Little Northern Bakehouse



  • Upcoming Events

  • Posts

    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      All I can say is this site is great!
×
×
  • Create New...