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Could I Have Celiac?

melanie-c

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melanie-c Newbie
melanie-c
Posted

I know about celiac, but honestly I never thought I would ever be thinking could I have it. I've even read Elizabeth Hasselbecks book before, but always though - thank goodness I don't have to worry about all that.

Years ago my doctor said I had IBS, but either I learned to live with it or things I did made it manageable or better. It wasn't unusual for me to eat something (especially mid-day) and my stomach to go into a fit and swell up from bloating, get cramps and have a diarehha episode.

I'm a vegan now, and when I first went off dairy I felt so much better in the stomach area. Only occasionally would the attacks happen. Now I'm getting attacks again and I have other odd symptoms. Some of the symptoms I suppose I've always had, I just have varying degrees and feel better worse sometimes or just don't associate them together.

In fact, I'm having a light attack right now with lots of tummy grumbling, slight cramping and bloating.

1. Attacks after eating - Bloating to the point that my bladder hurts (have interstycial cysitis), gas, diaherra, stomach cramping and pain.

2. Brain fog

3. Always tired, even after awaking - no energy

4. Loose stools (stick to the side of bowl) - Mostly every morning like clockwork, and sometimes more times during day.

5. low iron levels

6. lots of gas (although I eat a lot of fiber) and veggies

7. Stomach Rumbling

8. Pains on right side of body (right shoulder, right knee)

9. My allergies that are usually end of may to June have not stopped this year, so I feel mucousy, congested all the time now. I had a cough from early July till the end of August from it.

I tend to stick my head in the sand and think it can't be something I'm eating, but I'm really starting to think otherwise. The mental fog lately is horrible and I'm tired of feeling sick and tired.

Any chance I could have celiacs - With my allergies not going away, I'm wondering if I have a food sensitiviy. Any thoughts? I'm thinking I want to try a food elimination and see what happens.

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AVR1962 Collaborator
AVR1962
Posted

If you could get a doc to run a test for you would be the best bet however if you are just wondering and want to experiement you could always go back on gluten later if you thought this could be the answer. The symptoms listed would definately be worth trying to go gluten-free to see if they improved.

eatmeat4good Enthusiast
eatmeat4good
Posted

All of your symptoms listed are consistent with Celiac.

Including the interstitial cystitis.

I was very surprised when mine went away as soon as I got rid of gluten.

It was the first thing to disappear and it has never come back not even once in the year that I have been gluten free.

Don't stick your head in the sand.

You might be one of us and you could be feeling sooooo much better soon.

Testing is up to you, but I decided it wasn't worth it given that I was going to go gluten free regardless of what the tests said. It has made a world of difference to me.

I used to read about Celiac and think "That must be awful..I'm glad I don't have to deal with that!" Now when I think about all the people eating gluten and not knowing wheat is damaging them and causing all of their symptoms I think, "I'm so glad I know about Celiac and I don't have to deal with that!" I feel like one of the chosen few now that I know what gluten does.

It's hard to put all the pieces together before you know what is causing your symptoms, but once you try the diet and the symptoms go away, it is really wonderful to be "one of us." :rolleyes:

Goof Rookie
Goof
Posted

Agreed! Talk to your doctor, and go get tested. But don't change your diet beforehand. Otherwise, it can affect the results, and you'll have to go back on gluten for several weeks. I had many of the same symptoms. Once I went gluten free, the difference was huge!!

melanie-c Newbie
melanie-c
Posted
  • Author

All of your symptoms listed are consistent with Celiac.

Including the interstitial cystitis.

I was very surprised when mine went away as soon as I got rid of gluten.

It was the first thing to disappear and it has never come back not even once in the year that I have been gluten free.

Wow - I would have never thought Interstitial Cystitis and Celiacs could be related.

Hmm now I'm not sure what route to go - just trying to give up gluten (and I also want to try giving up soy) and seeing how I feel or going to get tested. Maybe I'll try to make a Dr's appt next week.

Also a little back-ground on my IC

I was diagnosed when I was 16 back in the mid 80's, so I've been living with this

for years now. Back then I used to have installations of DMSO that did help it.

The time in between installations got further and further apart and I'd only go

and have them when I would get flare-ups that were really painful. I eventually learned

the pain would go away the next morning if I just didn't go for a treatment.

It's something I've learned to live with over the years. I don't think it's as bad as it

was when I was younger, but the pain is still there but not all the time and I have

to go to the bathroom a lot more than normal people (6-10 times before going to bed at

night just try to completely get that empty feeling is annyoing). It affects my sleep

which I always thought was the reason I am chronically tired and fatigued. The gas

pains I get sometimes make me feel like I'm having a "flare" and for the longest time

I thought it was IC until I realized it was the pressure on my bladder.

eatmeat4good Enthusiast
eatmeat4good
Posted

I had the interstitial cystitis all of my life.

As a child I was a bedwetter. Badder spasms...always had to GO but never could empty completely. I was put on antibiotics on a daily basis for years.

I'm telling you...it could be gluten. It definitely was for me.

I pee normally for the first time in my life. I don't have any spasms or urgency like I used to. I don't have to take antibiotics anymore.

I'm 48.

I'm only one year gluten free.

It was wheat all along. :ph34r:

The spasms and IC were gone the first month I got off gluten.

I'm so excited for you if this is the case for you.

It's wonderful not to have that pain.

melanie-c Newbie
melanie-c
Posted
  • Author

Thanks everyone,

I'm definately not going to stick my head in the sand. I think I'll try going to the Dr. and see if he takes me seriously and then go from there. I'm going to start making a list of things I can eat that would be "vegan and Gluten Free" so when I'm ready to start removing things from my diet I have a plan and an idea of what to make.

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Twinklestars Contributor
Twinklestars
Posted

I also think you could have celiac. While you're still eating gluten (even though you feel unwell) I would get the testing done to try and find out. If it all comes out negative, there's nothing stopping you from going gluten free anyway. But if you go gluten free before any testing is done it will affect your results. Let us know how you go!

melanie-c Newbie
melanie-c
Posted
  • Author

Follow-up: I have a Dr's appointment for Friday at 2:30 PM. Step 1! I'll let you know what they say. I hope he is willing to do tests and/ or refer me to a GI Specialist.

I really appreciate everyone's replies. I really hope it's not Celiac Disease, yet knowing I could feel better almost makes me want to. At least then I would know what to do to feel better even thought it's super scary to think about cutting more foods out of my diet.

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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      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
      My only proof

      By knitty kitty · Posted

      @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
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      By Wheatwacked · Posted

      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
      My only proof

      By NanceK · Posted

      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
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      By Wheatwacked · Posted

      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.  
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