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

Wondering If This Could Be Celiac/gluten Intolerance


struggling

Recommended Posts

struggling Newbie

Hi I am new here and am hoping that I can find some support and/or advice on what I have been dealing with. I am 23 y/o female and am/was a competitive athlete (distance running). About 2 years ago I went from being extremely fit and healthy into a downward spiral. The long and short of it is that now two years and 3 stress fractures, chronic fatique/ iron deficiency, asthmatic like symptoms (difficulty taking a deep breath, lots of yawning), chronic brain fog and a slough of GI issues ( i.e. bloating, frequent inconsistent stools(some hard, some very fatty and loose), bouts of painful and embarrassing gas with alternating C and D...sorry for the details) and a whole lot of stress because of it all, I am just now starting to wonder if this could be an intolerance. I am pretty much fed up with Dr's telling me it is just stress and then sending me home with laxatives (does that make any sense?) or anti-anxiety meds!

So that was just the past year that this all came about. Since I can remember I have had a touchy and gassy GI system but I never thought much of it as I figured it had to do with all the veggies and fiber I ate plus my running. I have also always had pretty bad seasonal allergies and very dry skin with chronic little red bumps on the back of my upper and lower arms. Not sure if any of that is related but thought I might as well throw it out there.

Anyways just recently after doing some research I decided on my own to try and go gluten free...I figured it couldn't hurt and since no doctor seemed to be listening to me anyways I might as well give it a try. The results, well, they have been pretty noticeable. My energy levels have increased quite a bit as well as my "brain fog" seeming to lift. My GI system appears to have quieted down some too...is this noticeable decrease in symptoms enough to assume this is gluten related? Should I push to get tested by my doctor? I have one second cousin that has celiacs but it is unknown which side of the family it comes from, but I guess it is possible that it could run on the side I am related to. The thought of finding an culprit to these problems, and one that I can control almost seems too good to be true.

Thanks for any help. I really really appreciate it.


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



Celiac.com Sponsor (A8-M):



struggling Newbie

I guess I am just wondering if I am jumping to conclusions or over analyzing things...I am pretty desperate as my life pretty much seemed to deteriorate out of nowhere over the last two years.

buffettbride Enthusiast

I certainly wouldn't rule it out and your symptoms seem consistent with the many symptoms of gluten intolerance and celiac, especially since you seemed to have a positive response to a gluten-free diet. It would definitely be worth seeing a good GI doc about, although the testing process requires for you to continue eating gluten.

Even then, the tests aren't always reliable. Some folks like to use Open Original Shared Link as well, which can also do a genetic screen for the celiac and gluten intolerant genes.

Most importantly, though, if you get relief from a gluten-free diet, then regardless of a positive or negative diagnosis, you don't need a doctor's permission to follow it.

CarlaB Enthusiast

If you want to be tested for celiac, you need to do it now .... and you'll need to be eating gluten for the testing. It would be easier for you to go back on gluten now than to wait and go back on it for months after you've been gluten-free.

In my opinion, if all your health concerns clear up on a gluten-free diet, that says a lot!

Some of us have gluten intolerance because of another underlying health concern.

For me, my GI tract was always a weak area, as you describe. I got Lyme Disease, and my GI tract was one of the most affected areas.

I also had the shortness of breath you describe .... like I was hungry for air and couldn't get a full breath. That is from a coinfection of the lyme. I was tested for asthma ... I did not have it, I was actually hyperventilating.

My cognitive issues/brain fog eventually go pretty severe, too. Also, heart palpitations, joint pain, muscle aches, fatigue, etc.

Now that I'm treating the Lyme, the gluten intolerance went away entirely because it was a secondary problem to the Lyme. There is a thread here that can tell you more about this. Open Original Shared Link

On the other hand, if gluten is the primary problem, your health concerns should clear up. If they don't, you will want to keep looking for what else might be the problem along with gluten.

struggling Newbie

Thank you so much for you replies. Just having some form of support is really appreciated. I keep going back and forth on whether or not it really could be the case especially since my GI issues are still present some, but noticeably less (the biggest thing is that I haven't had any debilitating bloating in the past week +). I can be hyper-analytical and too hard on myself. However the lifting of the major clearing of brain fog and increase in energy levels I think is enough to say there is something going on so regardless of what future tests might say I am definitely going to stick to these dietary modifications. I want so badly to be able to get back to my running again but honestly the biggest things is that I just long to feel myself and be healthy again.

sorry for the venting, it just feels good to have a place where you can vent and people understand.

I have read, here and in other research, that the testing for celiacs/gluten intolerance are a bit shaky, but what methods do you think are the best out of what is available? I see that enterolab is something that is used quite often outside of the dr. office and it is something I think I may consider depending on how my appt goes on monday.

Anyways thanks again.:)

buffettbride Enthusiast

I don't know what I would do about this forum. My learning curve for the gluten-free life would have not have been so quick had I not found this place!

Trillian Rookie
Hi I am new here and am hoping that I can find some support and/or advice on what I have been dealing with. I am 23 y/o female and am/was a competitive athlete (distance running). About 2 years ago I went from being extremely fit and healthy into a downward spiral. The long and short of it is that now two years and 3 stress fractures, chronic fatique/ iron deficiency, asthmatic like symptoms (difficulty taking a deep breath, lots of yawning), chronic brain fog and a slough of GI issues ( i.e. bloating, frequent inconsistent stools(some hard, some very fatty and loose), bouts of painful and embarrassing gas with alternating C and D...sorry for the details) and a whole lot of stress because of it all, I am just now starting to wonder if this could be an intolerance. I am pretty much fed up with Dr's telling me it is just stress and then sending me home with laxatives (does that make any sense?) or anti-anxiety meds!

Thanks for any help. I really really appreciate it.

Your fractures and iron deficiencies can be direct effects of celiac. You should get a DEXA scan to check for bone-density, and get your iron and feritin levels checked. Since you've had 3 fractures, you probably have osteopenia or osteoporosis. I was diagnosed with osteoporosis (3 fractures in 3 years) and anemia first, and because of them, I found out that I have Celiac. Osteoporosis and anemia are common problems for people with Celiac and should be monitored by your doctor.


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



Celiac.com Sponsor (A8-M):



struggling Newbie

Just out of curiosity what enterolab tests do people recommend. Like I said I will probably consider this after seeing my doctor on Monday. Has literature been published yet on their specificity and sensitivity? I realize that no tests out there are completely accurate and that the dietary changes are the biggest indicator but still for some reason I really want to have some test tell me what is going on. I shouldn't but I do.

CarlaB Enthusiast

The Enterolab tests can only tell you whether you are sensitive to gluten .... something you can find out by dietary response.

You can be genetically tested to see if you have the markers for celiac disease. Thirty percent have celiac genes, one percent have celiac, so having the markers for it does not mean you have it.

They also test for gluten sensitive genes. However, unless you're Asian, you have two gluten sensitive or celiac genes. Every single gene is considered gluten sensitive except for DQ4, which is only found in Asians.

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. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over

    2. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    3. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

    4. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    5. - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,295
    • Most Online (within 30 mins)
      7,748

    LaniH
    Newest Member
    LaniH
    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

    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting 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.