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

Newly Diagnosed


BrianG

Recommended Posts

BrianG Explorer

Hello,

I was recently diagnosed with a mild case of celiacs. My symptoms consist of fatigue, headaches, foggy head, anemia; iron/b12/folate deficiencies. 
-Is this considered silent celiac? Since I don’t get very severe noticeable symptoms. 

-is it true that if I stop eating gluten for a while that my body will react more harshly to it when I do eat it? 
 

- since my symptoms are manageable what would happen if I just kept eating gluten? Would my symptoms eventually worsen and include diarrhea and nausea? 
 

I’m on day 2 or a gluten free diet and plan on taking this seriously but just have lots of questions. 
 

thank you 
 


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

Having a mild case of Celiac is akin to being a little bit pregnant.  

You have Celiac.  You have mild symptoms, but you are already experiencing malabsorption and vitamin and mineral deficiencies which are serious.   

Did you know wheat contains opioid compounds?  Dairy does, too.  You have opioid receptors in your brain and in your digestive tract and throughout your body.  You can make opioids in your body.  Ever stub your toe? Hurts really bad at first, but after a bit, the hurt fades.  That's your own body producing its own opioids.  

You've been eating these opioids from wheat.  These have "numbed" your gut, similar to how your stubbed toe quit hurting.  So maybe you don't feel any bad symptoms.  The wheat opioids wear off the longer you remain gluten free, so you may feel worse during that gluten withdrawal period. Once your body realizes it needs to produce more of its own opioids, you'll feel better.

Yes, if you return to eating gluten you can have a worse reaction including nausea and diarrhea because your body is still geared up to make those antigluten antibodies.  

If you go back to or continue consuming gluten, yes, your symptoms will worsen because the damage will increase.  A cascade of other health problems can ensue. 

Physical damage caused by the autoimmune reaction begins to occur in other organs besides just the intestines (pancreas and thyroid just to name a couple). 

And then there's the gut dysbiosis if you get SIBO (small intestinal bacterial overgrowth) and the resulting gas and bloating. 

Also dysfunction due to vitamin and mineral deficiencies begin to manifest, like anemia, osteoporosis, depression and other mental health changes.  

Anemia caused by iron, folate and B12 deficiencies are common in Celiac Disease.  Because the eight B vitamins all work together, you should supplement all of them together.  Thiamine, pyridoxine (B6), and niacin can help the fatigue.  Thiamine helps alleviate the nausea and throwing up and keeps the SIBO in check.  Riboflavin can help the headaches.  Magnesium, zinc,  and calcium are beneficial, too.  Tryptophan (a form of niacin) is necessary to heal the intestines.

Ask your doctor to refer you to a nutritionist.  It's part of proper follow up care for Celiacs.  

Hope this helps!

 

 

 

 

 

BrianG Explorer

This is all very useful information thank you! I spoke with a dietician already but probably will need a follow up.
Is it possible for my stomach to feel upset initially after stopping gluten? I’m on day 4 and my stomach just feels off. When I was eating gluten I rarely felt this way. could it be part of the withdrawal? 
thanks,

Brian 

GFinDC Veteran

Hi Brian,

The first 6 months of the gluten-free diet can be a little rough IMHO.  Recovery can seem sort of back and forth as far as symptoms go.  I suppose your doctor knows what he means by mild celiac but it doesn't mean much to me.  Your immune system either makes antibodies to gliaden or it doesn't.  Mild symptoms is a different thing though.

Since you are having some symptoms a few over the counter meds might help.  Pepto Bismol can help with gut irritation symptoms, peppermint Altoids or tea can help get gas out of the stomach.  Reducing sugar, carbs and dairy can help reduce food for bacteria that produces gas and discomfort.

The surface area of the small intestine is about the same as a tennis court.  So that's a lot of area to heal and a lot of territory for bacteria to colonize.  The villi lining of the small intestine is what is destroyed by the immune attack.  When it grows back we can absorb nutrients better.  Probiotics may help some.

Betaine HCL may help your digestion also when taken with meals.

https://www.verywellhealth.com/marsh-stage-of-celiac-disease-562711

BrianG Explorer
5 hours ago, GFinDC said:

Hi Brian,

The first 6 months of the gluten-free diet can be a little rough IMHO.  Recovery can seem sort of back and forth as far as symptoms go.  I suppose your doctor knows what he means by mild celiac but it doesn't mean much to me.  Your immune system either makes antibodies to gliaden or it doesn't.  Mild symptoms is a different thing though.

Since you are having some symptoms a few over the counter meds might help.  Pepto Bismol can help with gut irritation symptoms, peppermint Altoids or tea can help get gas out of the stomach.  Reducing sugar, carbs and dairy can help reduce food for bacteria that produces gas and discomfort.

The surface area of the small intestine is about the same as a tennis court.  So that's a lot of area to heal and a lot of territory for bacteria to colonize.  The villi lining of the small intestine is what is destroyed by the immune attack.  When it grows back we can absorb nutrients better.  Probiotics may help some.

Betaine HCL may help your digestion also when taken with meals.

https://www.verywellhealth.com/marsh-stage-of-celiac-disease-562711

Could you recommend a specific probiotic?  

If I am taking a multi-vitamin that has B's in it, do I still need to take a B complex? I currently take B12.

knitty kitty Grand Master

My suggestion would be to hold off on taking a probiotic for a while.  Changing your diet to a Paleo diet like the Autoimmune Protocol will starve out the bacteria feeding on carbohydrates allowing beneficial bacteria to repopulate by themselves.  

Yes, take your multivitamin and also your B Complex both everyday.  The B Complex vitamins are water soluble, so any excess is going to be peed out.  Having lots of B Complex vitamins in your system helps your body absorb them easily.

 

GFinDC Veteran
(edited)
On 4/3/2021 at 5:09 PM, BrianG said:

Could you recommend a specific probiotic?  

If I am taking a multi-vitamin that has B's in it, do I still need to take a B complex? I currently take B12.

Check out Jarrow Formula for one.  They are a good brand name.   Be sure to verify they are dairy-free tho.  Many probiotics include some dairy.  Solgar is a good brand and Naturemade too, but I haven't checked them for dairy.  You can also find coconut yogurt in some grocery stores.  "So Delicious" brand is one, but there others.  Yogurts are made by bacterial action so are usually a good source of pro-biotics.  Cheaper and tastier than pills too.  Saurkraut is another natural probiotic.

Edited by GFinDC

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



Celiac.com Sponsor (A8-M):



DJFL77I Experienced

 

On 4/2/2021 at 12:28 AM, BrianG said:

- since my symptoms are manageable what would happen if I just kept eating gluten?
 

nothing good...

i never had deficiencies for some reason even though i definitely had malabsorption going on because a lot of weight loss.  still havent gained it back

 

 

BrianG Explorer
4 hours ago, Gluten-Sucks said:

 

nothing good...

i never had deficiencies for some reason even though i definitely had malabsorption going on because a lot of weight loss.  still havent gained it back

 

 

How did you find out you had celiacs then? 

BrianG Explorer
17 hours ago, BrianG said:

Could you recommend a specific probiotic?  

If I am taking a multi-vitamin that has B's in it, do I still need to take a B complex? I currently take B12.

I woke up with a headache today. Typical kind I get, back of the head, dull, grows more intense, comes in waves. I’ve been gluten free for 5 days now. The only thing I may have messed up on was eating a holiday shaped Reese’s last night which could have cross contamination. Could I really be this sensitive to gluten? I was eating pizza and drinking beer before all this and felt fine the next day. Or maybe this is just residual effects from my overall anemia due to my celiacs? 

DJFL77I Experienced
19 hours ago, BrianG said:

How did you find out you had celiacs then? 

biopsy....

 

after having..

abdominal pains... weight loss...  off balance feeling when walking.....  dizziness...   reflux....   

 

 

DJFL77I Experienced
19 hours ago, BrianG said:

 The only thing I may have messed up on was eating a holiday shaped Reese’s last night which could have cross contamination. Could I really be this sensitive to gluten? 

cant eat anything but fresh cooked home made meals if you want to be 100% sure...  and possibly "certified gluten free" store bought items....  and dedicated gluten free bakeries..

BrianG Explorer
16 hours ago, Gluten-Sucks said:

biopsy....

 

after having..

abdominal pains... weight loss...  off balance feeling when walking.....  dizziness...   reflux....   

 

 

My yearly physical showed I had iron deficiency anemia along with b12 and folate deficiencies. Then I had an endoscopy, biopsy, and blood test to confirm the celiacs.  
I have also had GERD my entire life pretty much. Been on omeprazole since 18 and I’m 35. 

knitty kitty Grand Master

Omeprazole causes B12 deficiency. 

 

BrianG Explorer

Yes I’m aware, amongst others. 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
×
×
  • 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.