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I'm New, Confused, And Hoping For Guidance!

woolwhippet

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woolwhippet Explorer
woolwhippet
Posted

Hi,

I am 35 years old and I can't believe I am here. Since last August I have experienced what I now know is malabsorption ("D" about three or four + times per day). I was also tired and irritable. I kept thinking it was coffee. Then I finally gave up caffine altogether and I realized I was wrong because the "D" never stopped. Then I gave up milk. Then I took fibre supplements. Then I reduced the fibre in my diet. Still sick.

So after playing around with cutting out and reintroducing gluten I now realize what has been making me sick. I aso now know that this pesky rash on my scalp and butt that I have had since university may be DH.

I should have realized sooner considering I have three cousins and an Uncle who are diagnosed celiacs. My Grandmother on the same side had rheumatiod arthritis.

I want to make the diagnosis official. I see my family doctor next monday. I am worried she won't listen. I am worried that perhaps I am crazy and this is all a product of my imagination. I am worried it's not celiac and something much worse.

My big question is: exactly how much gluten do I have to eat per day to get a positive test? Right now I am only eating about 1 piece of bread per day and whatever hides in salad dressings etc. How long does it take for a body to eliminate gluten? I need to do my best to test positive because I need to solve this mystery.

My second question: will I gain or lose weight after being gluten free? I have been told I could gain 20 pounds! Problem is, if anything, I could stand to lose a few pounds!

Third question: Anyone experince an improvement in joint pain symptoms after being gluten-free?

Thanks for listening. Felt good just to type this and send it out into the wide world.

Lenore

The Wool Whippet

In Victoria BC

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AndreaB Contributor
AndreaB
Posted

Welcome Lenore! :)

I'm not an expert on the quantity of gluten consumed.....but I think I've read 3-4 slices of bread (equivalent) for 4-6 months. Hopefully someone else will come along and clarify that.

It does sound like gluten could very well be the problem. If you still have your rash, then maybe they could biopsy that.

As far as weight gain/loss. I've lost 10 pounds roughly. It fluctuates but unless you eat a lot of gluten free goodies you should be ok.

I had joint pain that went away but I don't know if it was soy or gluten. I went off of soy Feb 06 and went gluten very lite April 06, going gluten free June 06.

VioletBlue Contributor
VioletBlue
Posted
My big question is: exactly how much gluten do I have to eat per day to get a positive test? Right now I am only eating about 1 piece of bread per day and whatever hides in salad dressings etc. How long does it take for a body to eliminate gluten? I need to do my best to test positive because I need to solve this mystery.

My second question: will I gain or lose weight after being gluten free? I have been told I could gain 20 pounds! Problem is, if anything, I could stand to lose a few pounds!

Third question: Anyone experince an improvement in joint pain symptoms after being gluten-free?

Thanks for listening. Felt good just to type this and send it out into the wide world.

Lenore

The Wool Whippet

In Victoria BC

Hi Lenore. I too could stand to loose a few pounds. The biggest improvement I've seen to so far is that the bloating has mostly stopped. Clothes fit better now because I'm the same size from one day to the next, LOL. I've lost a few pounds since being diagnosed. I think there is something to the idea that there's a link for some people between being overweight and being Celiac, but I think there's also a lot more that goes into it than that, so I think it depends on you. For me there seems to be less of an urgency and importance surrounding food now. It is as if that little something in the back of my brain that urged me to eat has calmed or quieted down. I can't explain it any better than that. Eating is become more of a choice if that makes any sense. Course that could just be because so much of what I used to eat isn't an option and I'm still struggling to find a way to live day to day and figure out what is going to work for me.

I used to periodically get these attacks of all over joint pain, I'd say two or three a month. My entire body just seemed to ache. I haven't had one of those in well over a month. I've been gluten free about three months now. The lower back pain that had become almost constant has also gone away.

I wish you luck in finding a diagnosis. I know what it's like to wander through the medical system seeking answers.

violet

Ursa Major Collaborator
Ursa Major
Posted

Hi Lenore, and welcome to these boards.

It sure sounds like you may have celiac disease. That you feel better off gluten confirms that. How long have you been eating gluten-light? If it has been no more than two weeks, you should be okay for the tests. But if you truly want an official diagnosis, you need to start eating more gluteny stuff again.

On the other hand, even if your tests come back negative, you should go 100% gluten-free afterwards. Because the tests aren't all that reliable, there are plenty of false negatives. Nobody can stop you from eliminating gluten if it makes you feel better!

Yes, I also had the terrible joint pains. In fact, lots of people with celiac disease have them, and eliminating gluten is often the only thing that will make them go away.

As to weight gain, that is not necessarily going to happen. I lost weight when I started the gluten-free diet. If people are seriously underweight they'll obviously gain weight, and should. For people who are overweight (and unexplained weight gain is a very unrecognized, but common, symptom of celiac disease and can be a sign of malnutrition, too) it usually goes the other way.

If you still have those rashes, you may also want to see a dermatologist and have it biopsied. If the biopsy is positive for DH, you automatically have a firm diagnosis of celiac disease.

woolwhippet Explorer
woolwhippet
Posted
  • Author

Hi everyone, thanks for the welocme and for taking time to answer my questions. I am releived to hear about the joint pain easing up once off gluten--it's so tiresome!

So, do I need to ask my doctor for the blood panel and a refferal to a dermatologist? If the blood work comes back positive can I skip the biopsy? I am in Canada and have been told there is a long wait to see a specialist. Can I eliminate gluten before the biopsy?

The weirdest thing for me is realizing how hungry my body has been. I was at the point where I didn't ever feel content after a meal--more anxious. This weekend, after eating gluten light, I had that content feeling for the first time in years!

I am back to eating gluten again and the brain fog has already set in.

Even if I am not celiac, I just don't think I was meant to eat gluten.

Thanks again.

Lenore

Ursa Major Collaborator
Ursa Major
Posted

Lenore, I know that to see a specialist in Canada can take months (when I needed to see an orthopedic surgeon last time, I got an appointment EIGHTEEN MONTHS down the road, fortunately my chiropractor figured out the problem before that).

It seems that it is a much shorter wait to see a dermatologist. Too bad the one I saw first of all triple-booked people (giving everybody about three minutes of his time, and I sat there for THREE HOURS waiting to be seen), but was clueless as well. He took the biopsy from a rash that was almost healed (useless), and he took it right out of the middle of the rash (you're supposed to take it BESIDE the rash). Needless to say, it came back negative.

If your blood work comes back positive, and you notice a huge difference on the diet, you really would have a diagnosis. I personally would skip the biopsy. Of course, I skipped all of the tests, since the huge difference the diet made was good enough for me, and I had no intentions of making myself violently ill again. But it is obviously your choice, everybody is different.

If you decide to go for the biopsy you will need to stay on gluten until after the biopsy, because the gluten-free diet will heal your intestines, and the biopsy would end up being a false negative.

Mtndog Collaborator
Mtndog
Posted

Hi Lenore- Welcome to the board. It sounds like you've figured out a lot already. If you do have DH, the skin condition associated with celiac, then hopefully they can just biopsy that and skip the endoscopy.

The good thing is that you know you have celiac in your family, feel better without gluten, then you know to stay off.

There were plenty of times before I had an official diagnosis when I thought I was crazy. If you go to Open Original Shared Link fill it out and bring it when you go to see your doctor.

I thought I was crazy; my doctor didn't at all!

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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
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      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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