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Just Diagnosed

texmatt21

By texmatt21
in Coping with Celiac Disease

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texmatt21 Newbie
texmatt21
Posted

anlz01.webp

Just got diagnosed with celiac. In my doctor's words the results were "alarmingly high". I'd always wondered why my head was in a constant fog. I tried to go to a few doctors for it, even had an MRI and CT scan, of course they had no clue what it was and not once was celiac mentioned as a possible cause.

How is this not a bigger deal?! Why Why isn't food required to be labeled gluten free? I was the one who had to ask to be tested and my doctor acted like I was a nut when I did.

In case you can't see the pic here's the test results.

IgG 14.0 Flag range 0-6.1

IgA 19.0 Flag range 0-10.3

IgA antibody Positive

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1desperateladysaved Proficient
1desperateladysaved
Posted

I don't know why. Here's some little flowers ***** I would want you to get well soon. You will figure out the diet in time. Reading other posts here will help you understand more. I don't think any of us understand why doctors don't always know what is going on. But now you can do something to lift your own health. Maybe the foggy life will go away.

I hope so!

shadowicewolf Proficient
shadowicewolf
Posted

Most companies now do label if it has wheat in it (kraft and urvieler (sp fail)).

Doctors like to look for horses and not zebras, thats why. Its just soooo much easier for them <_<

At any rate, just read labels. Thats all you can really do.

psawyer Proficient
psawyer
Posted

In the US, wheat must be clearly disclosed either in the ingredient list, or in a "Contains" statement. Rye and oats don't hide.

The single word ingredient, "starch," means cord starch in the US and Canada.

Open Original Shared Link If you don't see "wheat, rye, barley, barley malt, oats" on the labels, its not there, or hidden in "flavors, starches, etc."

Terry Ambrose Newbie
Terry Ambrose
Posted

When I was diagnosed 10 years ago, most doctors had no clue as to what celiac disease was. Fortunately, I had a very tenacious doctor who wouldn't let go until she figured out what the problem was. Dealing with it today has become far easier than it was back in those days, but the diagnosis doesn't appear to be any easier to come by. Right now, you need to focus on getting well and learning what's safe and what's not. Begin by reading every single label and, when in doubt, call on your cell phone from the grocery story or look up the product online. It's incredibly time consuming at first, but it does get better. And many foods are now labeled as gluten free. They'll cost more, but they're safe, and that's what's most important for you now. Best of luck,

Terry

nvsmom Community Regular
nvsmom
Posted

Sorry to hear of your diagnosis. :( But I'm happy that you figured it out and have the test results to back it up... With those numbers, there is no question that you have it. I hope you have a quick recovery and are able to see improvements within a week or so. Good luck to you, but I'm sure you'll do fine. The diet takes a bit of getting used to but it's not that hard once you get into the swing of things.

texmatt21 Newbie
texmatt21
Posted
  • Author

Thank you everyone for all of your well wishes! As bad as the diagnosis is, I've started to feel incredible now that I've eliminated gluten from my diet! In school I was always the last one to complete any test even though I knew all of the answers. Most of my teachers wrote me off as slow or lazy. Even having a simple conversation with my friends was next to impossible. At least now I know why now!

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Megan- Newbie
Megan-
Posted

Hi there.

Hang in there, you're going to be able to handle the gluten free diet and trust me, you'll feel so much better soon. I too had mental fog and my blood work was in the 90s when I was diagnosed. I would reccommend trying to to stick with certified gluten products at first (they have a specific label) so you know you're not getting cross containinmation. I like pop chips, stoneyfield yogurt, jovial pasta etc, and trust them. Also, try to eat naturally gluten-free foods like vegetables, rice, meat, etc. Best of luck and would be happy to help you along the way.

Megan

GottaSki Mentor
GottaSki
Posted

How is this not a bigger deal?! Why Why isn't food required to be labeled gluten free? I was the one who had to ask to be tested and my doctor acted like I was a nut when I did.

Welcome Matt!

Both very good questions - awareness has improved a great deal in the three and a half years since I was diagnosed - things are moving in the right direction - although it often seems the knowledge needed throughout the medical community is being transported on the back of one lonely tortoise!

Great detective work on your part - perhaps I shouldn't, but I do take great pleasure in hearing stories of doctor's being educated by their patients - still isn't right and certainly not fair.

Stick to whole foods - think the perimeter of the grocery store - fresh produce, meat, dairy (if it doesn't bother you) for the first few months. It is best to limit processed gluten-free foods to treats as you heal.

The transition is tough, but it does get easier with time.

Hang in there :)

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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
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      @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
      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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