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Ugh So Frustrated!

plumpossum

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plumpossum Newbie
plumpossum
Posted

Ok, here's my story, I'm hoping that someone can relate!

Last year I suddenly became sick with the worst heartburn & indigestion of my life. I also began having stabbing pains in my right side. My mother had a Sphincter of Oddi deformity, which the doctors had misdiagnosed as a bad gallbladder for seven years before she went into pancreatitis, and while she was in surgery to have her gallbladder removed, they realized that the real issue was the deformity. So when I started having side pains, indigestion, and heartburn, I immediately thought I probably had the same thing. My doctor became convinced it was my gallbladder (mind you, my mother had no gallstones.) During the same time I also developed Psoriasis on just my left elbow- no where else. My doctor performed the following tests:

Ultrasound

CT Scan (which sent me into anaphylaxsis...)

Upper GI

HIDA Scan

All came back absolutely normal. The doctor prescribed Aciphex and Levsin.

In October I had a bout of gastroenteritis that had me in the emergency room being rehydrated and pooping blood.

Shortly after the gastroenteritis I went on a low-carb diet and felt great, but gave up when I got another bout of "stomach flu." However, my previous symptoms of side pain, indigestion, and heartburn disappeared and I stopped taking Aciphex.

On July 6 I thought I ate something bad, had the flu, etc. My main symptoms were heart palpitations, chills and then sweats, nausea (all day, every day), indigestion (I've been sleeping sitting up for the past month), chest, right side, and left side pain. I had diarrhea maybe four or five times over the last month.

My doctor finally saw me. He said that there was no reason to believe I had gallbladder issues because of the tests I took last year... He then gave me the old standby diagnosis: IBS. If I had IBS, wouldn't my main concerns be diarrhea or constipation? He then refilled my prescriptions of Aciphex & Levsin, which does not make sense for IBS at all considering one is for reflux and one is a muscle relaxer. He performed a CBC blood test, a test for infection/inflammation, and a Celiac panel. The first two came back absolutely normal (pancreatitis would've shown on the second one) and the Celiac panel should be back on Wednesday.

About three months ago I went to an allergist. Lately my seasonal allergies seem to be fading away (hooray!) and new intolerances have appeared. For instance, I suddenly welled up with tears and started itching uncontrollably around cats and rabbits. The allergist tested for a wheat allergy and the result was negative.

I'm at my wit's end!!! I cannot eat anything without getting sick. Nothing seems to be helping any of my symptoms. My PCP told me to eat a low fat/protein high carbohydrate diet to treat IBS and to take the medicine that I am on and is not working. I'm glad he had the good sense to test for Celiac, but man...I'm in pain NOW. I feel like there's nothing I can eat, I'm afraid to eat wheat, protein, or fat. In the last week I've lost 10 pounds and I'm starving but cannot eat. I'm having to forcefeed myself to maintain 900 calories and feel absolutely nauseous anytime anything enters my mouth. I'm exhausted.

Does Celiac just happen all of the sudden like that? I never had digestive issues before having my son 3 years ago, and I know that IBS can appear after a major biological change like that, but does Celiac?

Outside of the stuff that is just happening now, I also have ridged nails, and the aforementioned Psoriasis. There is a strong history of mental illness (manic depression) in my immediate family. I know these are all risk factors for Celiac.

I bought some gluten free foods, hoping that that will at least help my body chill out a little. But I am just so frustrated!!

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Ursa Major Collaborator
Ursa Major
Posted

If you have the celiac disease genes, it is entirely possible that your pregnancy and giving birth could have triggered active celiac disease. A lot of people here were fine before having babies.

In which case eating low fat/low protein and high carb is about the WORST possible diet for you! In fact, that kind of diet isn't good for anybody.

You felt better on a low carb diet. That is very telling. I suggest, now that you've had your blood test done, what stops you from starting on the gluten-free diet? Of course, if you want to have an endoscopy with biopsies done, you will have to keep eating gluten until after that is done.

But you sure sound like you have celiac disease.

plumpossum Newbie
plumpossum
Posted
  • Author

My doctor acknowledged that Celiac is often misdiagnosed as IBS, and I've also read a lot of people here saying they were diagnosed with IBS. Is there anything else that is often confused with Celiac? Do stabbing pains in the sides come with Celiac?

I'm testing out gluten free and low to no meat for now (I have to do a stool sample next week and have to be off all redmeat and have minimal white meat.) My diet at the moment is pretty much Rice Chex, Rice milk, Gluten free waffles, and vegetable soup.

ShayFL Enthusiast
ShayFL
Posted

Some rice milks arent gluten free even if they say so. Look for "Barley Malt" and call if you have too. I forget which one is NOT gluten-free because I dont drink rice milk.

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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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