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

Glutened Vs. Uterus


melmak5

Recommended Posts

melmak5 Contributor

JNB - thank you, I know this is temporary, its just kicking my butt today.

Yes. I was on probiotics, before, during and after being on the antibiotics. I have switched and mixed two different brands, to make sure I was getting enough.

I have avoided dairy, corn and soy for the past two months. (I tried re-introducing all three on separate occasions and each caused more pain/bloating/D)

I will be honest that I have had a little bit of dairy of the past week. I know its counter intuitive to feel unwell and still eat something that is not helping with that, but dairy is kind of my world. I work in a cheese shop, I have made cheese, I just finished writing a piece on raw milk for a magazine.

I know about blue cheese and haven't touched the stuff, but I did put some cow's milk in my coffee this morning... that's the extent of my "dairy free cheating."

I will take dairy back out again.


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



Celiac.com Sponsor (A8-M):



JNBunnie1 Community Regular
JNB - thank you, I know this is temporary, its just kicking my butt today.

Yes. I was on probiotics, before, during and after being on the antibiotics. I have switched and mixed two different brands, to make sure I was getting enough.

I have avoided dairy, corn and soy for the past two months. (I tried re-introducing all three on separate occasions and each caused more pain/bloating/D)

I will be honest that I have had a little bit of dairy of the past week. I know its counter intuitive to feel unwell and still eat something that is not helping with that, but dairy is kind of my world. I work in a cheese shop, I have made cheese, I just finished writing a piece on raw milk for a magazine.

I know about blue cheese and haven't touched the stuff, but I did put some cow's milk in my coffee this morning... that's the extent of my "dairy free cheating."

I will take dairy back out again.

I was actually asking because so many dairy things can be so very beneficial, ESPECIALLY raw milk, ESPECIALLY raw goat's milk if you can get it. A lot of people who can't tolerate normal dairy can tolerate raw goat's milk. Actually, after the last time I got glutened, I became temporarily lactose intolerant for the first time. I found that taking a lactase with each meal made it completely tolerable for me, and I stuck with it because I so deperately need the calories. If you'd like to try either of those things, they sell lactase super-cheap at walmart, and the wesbite realmilk.org can help you find a goat's milk supplier in you area, if it's legal in your state. It'll cost you though, that's the only problem.

Any chance you could tell me what brand probiotics you're using?

melmak5 Contributor

I can get raw cow's milk, but not goat at this time... though I am not sure my body is down with either.

I take Jarro-Dophilus (4.4 billion per capsule, 8 species)

FloraSmart (6 billion per caplet, 10 species)

I chose them cause they are both dairy-free, gluten-free and are not suppose to break down in the stomach.

I take one capsule in the morning, when I get up, with a full glass of water. (I try to get ready, THEN eat breakfast, so they have time in there by themselves).

I usually take another one in the evening.

JNBunnie1 Community Regular

Hmm, well, sounds to me like you're doing everything right, as far as my knowledge extends. How long have you been gluten-free, by the way?

For foods that are healing to the digestive tract, I'd try Weston Price's website, also. I found a farm that sells goat milk out in Mendon, not sure if they're operational or taking new customers or if you'd really wanna drive that far....

melmak5 Contributor

I don't have a car, so I probably won't make the trip, but its really good to know its available.

Gluten free since mid-June, but I had a lot of trouble (ie - was taking a multivitamin with wheat, working in an office licking envelopes, etc. - I had a big learning curve with one of those doctors who called on the phone and said "you have celiac disease, go look it up on the internet and don't eat gluten)

Maybe some of this is reproductively related. Hopefully once that is cleared up the focus can be all digestive.

Thanks again!

JNBunnie1 Community Regular

Well, good lord girl, give yourself a minute to breathe! Very rarely does anyone get better right away, and I think it WILL take a while for the bacterial stuff in your system to straighten out. You're still healing, it may take some time. But you're doing the exactly right thing.

And if it makes you feel any better, I didn't know that rye was unsafe for over a year after I stopped eating wheat. Only recently was I able to confirm to myself that I have Celiac, I got DH for the first time. Up til a few months before then, I'd been glutening myself unknowingly, and not understanding why I was still so tired all the time, even though my GI symptoms went away. I only learned when I came to this board.

And there's always a chance there's a co-op for raw dairy in your neighborhood, maybe get in touch with your local celiac support chapter for ideas? That's only if you're only lactose intolerant though, if you have a casein issue there's no pill you can take for that.

melmak5 Contributor

I know, patience is not my thing.

It took the doctors 2 months to diagnose me, and I know in "celiac diagnosis time" that is but a speck, but it just feels like I have been sick and unwell for a lot longer. Being in the ER last week just took so much physically and emotionally out of me. I just feel beat.

I have had some difficulties contacting the local support group, perhaps summer is a busy time for people. I hear nothing but great things about them, so I am going to give them another shot.

I just, just found a woman who lives close by who picks up raw milk every 3 weeks, so there is a chance I can car pool.

I have never been tested for any dairy issues. Many years ago my doctor told me to try lactaid when I had some digestive problems (when I was diagnosed as being allergic to MSG) and it helped some of the time, but not all. Right now anything with fat has been an issue, but maybe I can give lactaid + yogurt a try and see how that fairs.

I have the overwhelming urge to frankenstein myself some new body parts and see how they do too.


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



Celiac.com Sponsor (A8-M):



JNBunnie1 Community Regular
I know, patience is not my thing.

It took the doctors 2 months to diagnose me, and I know in "celiac diagnosis time" that is but a speck, but it just feels like I have been sick and unwell for a lot longer. Being in the ER last week just took so much physically and emotionally out of me. I just feel beat.

I have had some difficulties contacting the local support group, perhaps summer is a busy time for people. I hear nothing but great things about them, so I am going to give them another shot.

I just, just found a woman who lives close by who picks up raw milk every 3 weeks, so there is a chance I can car pool.

I have never been tested for any dairy issues. Many years ago my doctor told me to try lactaid when I had some digestive problems (when I was diagnosed as being allergic to MSG) and it helped some of the time, but not all. Right now anything with fat has been an issue, but maybe I can give lactaid + yogurt a try and see how that fairs.

I have the overwhelming urge to frankenstein myself some new body parts and see how they do too.

Good idea! Just make sure it's plain yogurt, pref. organic, definitely don't need all that extra sugar. I add frozn fruit, like cherries, makes a yummy syrup when it melts, and it's just plain fruit.

jmd3 Contributor
- I had a big learning curve with one of those doctors who called on the phone and said "you have celiac disease, go look it up on the internet and don't eat gluten)

I had two drs tell me the same thing, one in office, one on the phone. It is a shocked because you have no idea where to go.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    2. - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    3. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

    4. - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

    5. - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,581
    • Most Online (within 30 mins)
      7,748

    MaggieSc
    Newest Member
    MaggieSc
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jane02
      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • 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.