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Celiac. Figured Out.

sapphire-sky

By sapphire-sky
in Coping with Celiac Disease

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sapphire-sky Newbie
sapphire-sky
Posted

Hi everyone,

here's my story. 2 years ago I started to have problems with uncontrolable weight gain. I was always a very skinny girl before(always underweight). And then all of a sudden I started gaining weight fast...38 pounds in 6 months! I also had problems with severe bloating(which I thought was caused by salt and it occured before the weight issues), severe heartburn, mouth ulcers and depression( which I thought was my own fault), I didn't really want anything in life, I had no energy... And being 18 that didn't seem normal. It's not normal at any age.

I went to a genecologist since I have never had regular periods, I got tested 4 a thousand hormones and she found progesterone deficency and ovarian cysts due to lack of ovulation. I told all the docs I've visited about the mouth ulcers and etc...they just told me to take vitamins. And I did, all the time. I ate healthy, I had a diet based on whole grains, I eliminated meat, but nothing changed. I still felt half dead, I still had severe bloating though I limited my salt intake to a minimum. I was still always hungry, I never felt satisfied and I didn't lose any weight... Until lately everything changed when I decided to go on a low carb diet. I eliminated grains, bread etc...ate only veggies, meat, fish, poltry for 2 weeks. And you know what happened? I literally started to deflate...Like a baloon, I forgot about heartburn, the ulcers went away and...for the first time in a long time I didn't feel constant hunger! And then I decided that maybe a whole grain breakfast 2 times a week wouldn't hurt. And guess what? It did!! I couldn't understand it, I ate whole grain pasta for breakfast one day and oatmeal the next and it caused an instant reaction. Bloating, hunger, an overall uncomfortable feeling. The second day was the worst, after eating the oatmeal I started overeating and drinking water, but it seemed like my kidneys and intestines just shut down. My body was just retaing everything... I knew that the only thing I changed in my diet were the grains. Not in my wildest dreams could I imagine that a person can have such an intolerance! Grains are supposed to be healthy, but then why is this happening? I decided to look it up online and I found that I'm not alone. I found the truth when NONE of the doctors could.

I don't live in the US, and I don't know if we have gluten free products. Please give me some helpful tips. How do I make sure I'm not consuming it? How long does it take for all the symptoms to go away?

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ravenwoodglass Mentor
ravenwoodglass
Posted

How long it takes to feel better depends on the person and the amount of damage they have and how many body systems have been effected. You may get a lot of relief very quickly but most of us have ups and downs for a while. It is easiest to be gluten free and you will heal quickest by eating as little processed food as possible. Eat meat and fruits, veggies, nuts, beans, rice etc. Many of us find we can not tolerate dairy very well at first as the villi that are damaged in your small intestine also create the enzyme needed to digest dairy. You can add it back in after a month or two and see if you react. You also want to be careful of gluten ingredients in your shampoos, toiletries and makeup. Check out the Products section or do a quick search to see if the stuff you use is something that others have already checked. Also watch out for meds over the counter and script. Have your pharmacist check them or if they have a phone number on the package call the company yourself.

You have found a great site for support and info. Ask any query you may need to and do as much reading as you can. If you tell us what country you are in there may be members there that can help with available gluten-free items. Welcome and I hope you get relief soon.

rsm Newbie
rsm
Posted

Grains are not always good for you! Read labels, start with meats and veggies, fruit, rice and slowly add things in to see if you can tolerate them. I had to give up dairy as well. It may take months or years to be completely better but it is nice to be on the road to recovery. To know what the problem is. I had doctors telling me to eat lots of wheat fiber, I always felt worse..... Many, many foods are naturally gluten free. There is still a great variety of foods available to us. Welcome to the gluten free world!

Vykt0r Rookie
Vykt0r
Posted

Quite honestly, this is the story of my life...mostly. Back in the U.S., though.

Kaycee Collaborator
Kaycee
Posted

Story of my life too, but not in the US.

I knew my problems had to be related to something, something that I ate everyday. I did not make the connection until I tried dieting, eating naturally less bread and what do you know, I figured it out. It was the gluten getting me.

Cathy

loco-ladi Contributor
loco-ladi
Posted

My "road to recovery" started a few years ago on a trip "back home" and was invited by my cousin and my grammie to eat lunch, I tried to decline giving my ever famous "eating is like playing russian roulette" speech when my cousin said..... I bet if you eat lunch with us you wont get sick.......

dang but she was right and she hadn't even been diagnosed yet! (she is now thanks to me, lol) The next day she gave me "the list" and darned if for the next few days not eating anything on it, not once did I get sick! had other issues but no sickness and a few other problems decreased as well......

upon arriving home I asked my doctor about it....... he said "I told you its acid reflux nothing more, just take this little pill and you'll feel alllll better"

and I again refused his little miricle pill, they didnt work before I wasn't going to do it again!

I started searching, and found a nice lady at the hospital in the kitchen........ the rest is history, and the dr still doesn't believe me, well, gotta go make an appointment in the am, will see what happens now....... need some blood work done, think I am having b12 issues and maybe iron? not sure what else.

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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
      Related issues

      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
      Feel like I’m starting over

      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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