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

Going To Md Today, Asking About Celiac/gluten


sickoftummyaches

Recommended Posts

sickoftummyaches Newbie

Hello

I am new here, but so far have found the info fantastic.

I'm in my late 20's female. I began having stomach issues about 4 years ago when I was pregnant with my first child...with that pregnancy I'd have excessively LOUD and frequent stomach gurgling noises...almost sounded like a wounded animal! I had issues with alternating constipation + diarrhea + abdominal pain, excessive gas. I figured this is all the joys of pregnancy, until I had my daughter and it didn't go away!

This January I was dx with gallstones, so I had a lap chole and got that sucker out!

Now, here I am with the same issues :excessive gas, pain, distention (like looking 5 months pregnant), FATIGUE (so bad!), a couple days of feeling good and then back to tummy aching, constipation, then loose stools, pain, gas, loud bowel sounds etc.

I am actually headed to my internist in a little bit to follow up on my antidepressant (wellbutrin), which I started in August after coming down with some nasty depression. Wellbutrin is supposed to help with the fatigue, but so far I feel the same...could always sleep, and always sleep 12+ hours if I could (not with kids!).

I suppose I am scared to get "you have IBS". I do like my MD, so if I bring up gluten issues I'm guessing she'd test me. I have a PPO and I can see specialists (GI) if needed too. Oh and I am in nursing school and we tested our blood sugars and mine, at 8:30am, two hours after I ate an eggwhite flatbread sandwich was 66? Huh? Pretty low for non-fasting? I don't know. I guess I was just looking for some answers. I HATE feeling this way and my husband is sick of me complaining about stomach pain,etc! Oh, and he's not a fan of the gas ;)

Does this sound like it could be gluten issues? IBS? Thanks in advance!


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



Celiac.com Sponsor (A8-M):



littlesmiles Newbie

I had a similar situation w/ the antidepressant, but I was taking paxil. i'm wondering if the two cause each other to flare. let me know how your appointment goes, and good luck.

Dixiebell Contributor

Welcome sickoftummyaches!

I was severely depressed, or so I thought and had terrible fatigue. My Dr. put me on wellbutrin also(pre gluten free) and it helped for a while then the fatigue came back with a vengance. Then she put me on prozac and I still didn't feel better. She actually told me to see a 'mental health care specialist'. I didn't, I started eating gluten free, weaned myself off the prozac(I had done this before), got some higher IU of vit D, fish oil, B complex and I started to feel like a new person.

Yes it does sound like gluten problems. BTW, IBS is a symptom and Dr.s like to use it when they just don't know what is wrong.

If you have testing and the results are negative please do try gluten free, it helped me so much.

Skylark Collaborator

Get the testing, then try the diet. You have nothing to lose but all that stomach trouble and depression.

By the way, I was treated with Prozac for the celiac fatigue and depression. My mood is normal now with proper nutrition and a gluten-free diet. The antidepressants don't cause celiac - the depression can be an early sign of it!

sickoftummyaches Newbie

Thank you all sooooo much.

Shockingly enough, my doctor claims IBS. She said my Vit D was low and put me on the rx 50000 IU once weekly for 4 weeks. She feels like Vit D is a major factor of my fatigue...yet I'm not so sure since I've been fatigued for 4 years and my vit D has been normal besides this time. She said to eat a high fiber diet with lots of water and take Align probiotics. If the issues keep up she would like me to see a GI doc. She even mentioned an ulcer...but I don't have any heartburn/indigestion issues.

I really do eat more fiber than most people. I think I'll give it 2 more weeks before I make an appt with a GI doc.

Also, I had a great effect from the wellbutrin on my energy at first and it also went away...bummer....But my mood is better, I'm just so damn tired! I think the root cause of my depression was always feeling so tired, and when my kids would wake up early I'd feel like I slept 2 hours when I'd slept 8 or 9. The constant urge to sleep just made me crabby and led to depression. A vicious cycle!

Skylark Collaborator

So did you get the celiac bloodwork you were wanting?

ravenwoodglass Mentor

Thank you all sooooo much.

Shockingly enough, my doctor claims IBS. She said my Vit D was low and put me on the rx 50000 IU once weekly for 4 weeks. She feels like Vit D is a major factor of my fatigue...yet I'm not so sure since I've been fatigued for 4 years and my vit D has been normal besides this time. She said to eat a high fiber diet with lots of water and take Align probiotics. If the issues keep up she would like me to see a GI doc. She even mentioned an ulcer...but I don't have any heartburn/indigestion issues.

I really do eat more fiber than most people. I think I'll give it 2 more weeks before I make an appt with a GI doc.

Also, I had a great effect from the wellbutrin on my energy at first and it also went away...bummer....But my mood is better, I'm just so damn tired! I think the root cause of my depression was always feeling so tired, and when my kids would wake up early I'd feel like I slept 2 hours when I'd slept 8 or 9. The constant urge to sleep just made me crabby and led to depression. A vicious cycle!

Or the root cause of your depression could be celiac. It can have that effect on people. There is some new research that is encouraging doctors to test folks with depression that do not respond to meds. Did the doctor do the celiac panel or just blow you off with the IBS 'diagnosis'?


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



Celiac.com Sponsor (A8-M):



Raebies Newbie

Shockingly enough, my doctor claims IBS. She said my Vit D was low and put me on the rx 50000 IU once weekly for 4 weeks. She feels like Vit D is a major factor of my fatigue...yet I'm not so sure since I've been fatigued for 4 years and my vit D has been normal besides this time.

I went to my doctor for extreme fatigue and re-occuring sinus infections. She said my vitamin D levels were lo, she gave me the RX suppliment and told me to get a dietary suppliment with Vit D in it and that was that. The thing is... I drink about a gallon of milk, fortified with Vit D, a WEEK. I shouldn't have had low Vit D levels.

I went gluten-free 6 weeks ago and the fatigue is pretty much gone (except for the fact I'm fighting off the flu right now, rather effectively I might add). I'll have to see how my levels are next time I get a blood test.

Looking for answers Contributor

Be sure to also try digestive enzymes. Many people find they have trouble with digestion and nausea after they have their gallbladders removed. While we can live without them, they do serve a purpose and help break down food.

Looking for answers Contributor

I went to my doctor for extreme fatigue and re-occuring sinus infections. She said my vitamin D levels were lo, she gave me the RX suppliment and told me to get a dietary suppliment with Vit D in it and that was that. The thing is... I drink about a gallon of milk, fortified with Vit D, a WEEK. I shouldn't have had low Vit D levels.

I went gluten-free 6 weeks ago and the fatigue is pretty much gone (except for the fact I'm fighting off the flu right now, rather effectively I might add). I'll have to see how my levels are next time I get a blood test.

Two thoughts to share here: vitamin D fortified in milk (meaning it's added and synthetic) is hard for the body to absorb. You should try taking supplements and be sure it's Vitamin D3, not Vitmain D2 (which is found in milk). Also, it's fat soluble, so be sure to take it with fat. I take mine with my Omega 3 supplements. Also, many people find that dairy leads to chronic sinus infections/allergies. It does for me. I tried to be brave two weeks ago and ate some yogurt, just to come down with a sore throat later in the day, that turned into a full-blown cold that lasted a week. Not pleasant. You may want to try to eliminate milk for a while and see if it helps.

sickoftummyaches Newbie

Oh, no, she did zero bloodwork on me. She had vit D levels from my previous visit.

I went ahead and set up an appt with a GI doc. I won't get in until Dec. 13th. I hope she has some answers...even if it IS IBS, I'd like to rule out other stuff.

Thanks for all the advice here.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,406
    • Most Online (within 30 mins)
      7,748

    Ripken
    Newest Member
    Ripken
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Pablohoyasaxa
      I feel your pain. Grain and gluten intolerant. Hang in there. This forum is very helpful
    • ElisaL
      IDK how common it is but it does happen. I'm celiac, allergic, and intolerant to the fiber in grains. (Fodmaps) So not only do I get sick from cross contamination, also gluten free wheat statch/fiber, and beauty products with wheat will get me. While I don't stop breathing the full body hives and short breath are not fun. Then once I make through that me and the bathroom become reacquaint. Sigh if I didn't feel so much better with the restrictions on my diet I'd feel sorry for myself. Least it makes for some good jokes about how the gremlin that lives in my gut really hates wheat. 
    • Wends
      Hi Dora77. “Questions I Need Help With” “1. Is it realistically safe to eat food my mom cooks…” YES - you wouldn’t be here if it wasn’t for your mother. Trust she still knows how to take the best care of you in her own way. Mishaps and cross contamination may happen - will happen on occasion, in fact - that’s life. But for the bulk of it as long as you’re aware of cc and try to avoid it for the most part, don’t sweat the small stuff! See the gluten free diet as a process. Own the process, Do Not let the process own you! “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.” NO - this is OCD brain at its best! Hijacking your thoughts and justifying it because of the very real fear of gluten contamination. That’s OCD all over. Like a devil in the driving seat. Fears that are based on some kind of reality are hard to argue with. Boss it back! Recognise this for what it is. OCD using fear of gluten as its excuse to keep you entrapped. Own the OCD in this scenario, don’t let it own you. Normal cleanliness rules apply. Washing your hands before you handle food you’re putting in your mouth is fine. Washing after the gym is normal. Once daily cleansing wipe of your phone etc. Even if you did go rubbing your hands all over surfaces and licking them there might be a trace exposure to gluten possible. But I’m guessing you don’t usually do that sort of thing. Even if you inadvertently were to ingest trace gluten - it won’t be enough to do damage, no. It takes weeks to months of at least a few hundred milligrams of gliadin daily for the innate immune system followed by the adaptive immune system in coeliac disease to kick in and start producing antibodies and cause villous atrophy. “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?” Only biopsy, as the gold standard of diagnosis, can tell for certain if villi have recovered. Having said that video capsule etc. can give an indication of any inflammation. “4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust?” Assuming your employer provides all necessary PPE - appropriate mask and overalls etc. All you can do is take the precautions that are advised according to risk assessments and regulations of the relevant industry governing bodies? (I don’t know what this would be in the USA. Sorry. But there’s safety and governing regs in the UK for this sort of thing. Assuming it would be very similar over the pond in fairness). “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.)” This comes down to personal threshold of gluten tolerance. People that are highly sensitive may need certified products. Especially those with dermatitis herpetiformis - the skin manifestation of gluten sensitivity. Listen to your body on this one. “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?” This one is easy - when following a strict gluten free diet, avoid products that say May contain traces of gluten. But it does not have to be labelled gluten free. There are many foods naturally gluten free. Having said that, there is nuance and personal tolerance threshold. If you’re super sensitive “may contain gluten” labelling is a godsend. But this kind of labelling is more aimed at informing customers with type 1 food hypersensitivity/ allergy reactions. The company is basically legally covering themselves, because there may be a risk of cross contamination. Not to be confused that it means there is cross contamination. In addition to products being labelled gluten free. Many products that are labelled can still contain gluten by the way - in fact any processed products labelled gluten free can still contain the allowable level of gluten (up to 20 parts per million according to Codex). A study was done not too long ago that showed gluten free processed products such as cereals, breads, flours etc. can and some are in fact contaminated and have above the legal allowable amount of gluten in them. While most gluten free products are fine for most celiac patients and tolerated, highly sensitive patients fail to heal fully if relying on processed gluten free products. The trace gluten exposure adds up for someone eating a typical western diet of gluten free cereal for breakfast, gluten free sandwich for lunch, gluten free pasta or pizza for dinner for example day after day, week after week. This is why, at least in the beginning after diagnosis, the gluten free diet should be one of whole real food - food that does not require a label. Meats, oily fish, eggs, beans, natural gluten free complex carbohydrates and vegetables according to custom and taste. Limit fruit as fructose worsens leaky gut and has been hypothetically linked to increased OCD and ADHD - Professor Richard Johnson published study on this recently. “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?” NO and YES. What you listed as your current, limited diet is nutrient poor. Correct it as soon as possible for your own sake and future health! Ditto what others have replied regarding vitamin and minerals that are lacking in malabsorption syndromes like celiacs and need replenishing. Gluten free products are not fortified. You were likely healthier, dare I say it, on a gluten containing diet for this reason. Your brain , and gut for healing and maintenance, needs lots of nourishment from omega 3s, B complex vitamins, folate, B12, iron, selenium etc. Meats, fish, natural fats that come with, do not fear - the brain is made of fat. Limit sugar, seed oils, and high glycemic cereals and fruit like bananas unfortunately as they can cause blood sugar highs and lows that can worsen anxiety in some people. Refined carbohydrates should be limited for the same reason. Fructose and simple sugars in excess feed the unhealthy gut bugs that wreak havoc with anxiety disorders like OCD. White potatoes can be problematic for some, also. It can take six weeks of elimination to see improvements. Note, consult your physician regards insulin adjustment if you reduce carbohydrates in the diet. Dr Bernstein diabetes protocol has worked for thousands. Ketogenic and low carbohydrate diets for mental and neurological conditions have shown improvements. Limited studies have and are being conducted under metabolic psychology and nutritional psychology. In a good proportion of anxiety disorders, mental, and neurological conditions including dementias, the brain is lacking nutrition and usable energy, not a drug. Similar in many autoimmune conditions, including celiacs, the prevailing hypothesis is that gut inflammation and resultant permeability allowing exposure to antigens begets triggering the genetically susceptible immune system response. Modern lifestyle exposure, one of the biggest being the food we choose to eat plays a huge role. Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “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 it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “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.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “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.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “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.” Better if it is gluten free, yes. “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.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “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.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
×
×
  • Create New...