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Can Symptoms Get Dangerously Worse?

Holly4

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Holly4 Rookie
Holly4
Posted

It seems like all of my doctors think you have to have had symptoms for a long time in order to have celiac. I have a positive blood test and am waiting for my biopsy which is in another month. I got sick with strep then the stomach flu. My diarrhea wouldn't go away so they tested for celiac and here I am....

I feel like my symptoms keep getting worse and worse each day since I got sick last. My hands are numb most of the time now and I feel like I am floating around with a weird pounding in my head. Sounds that aren't loud are really loud to me. Im not sure this is even celiac related! I ate breadsticks yesterday and was so sick by the nighttime. I woke with super swollen hands and a bad headache and super dizzy. My concern is that I will keep getting more and more sick as I await my biopsy. My doc wants to rule out celiac for sure.

Could these symptoms get dangerously worse in a months time? Could my vitamin levels have changed that much in the last month since I first got tested? My doctor is going off of labs that were drawn a month ago. Does Celiac come on that quickly? My concern is that I will keep on my normal diet and do serious damage while I wait.

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rosetapper23 Explorer
rosetapper23
Posted

Grrrr....I really don't like doctors sometimes. It sounds as though you may be experiencing damage to your villi. And, yes, it can get much worse. Why don't doctors "get" this??

Just from accidentally eating gluten a few years back, I lost the ability to absorb iron and had to receive it intravenously for two years afterward! Another accidental "glutening" last April caused deficiencies in both zinc and manganese, which affected the health of my tendons, making them floppy. As a result, both of my feet fractured because the tendons couldn't support them properly. Six painful months later with a walking boot on the foot with worse break, I finally figured out what caused the breakage in the first place.

So, I'm a little bit worried about you. Because you're experiencing numbness in your hands and other severe symptoms, your doctor should definitely consider allowing you to go on a gluten-free diet. If you feels lots better, why would an endoscopy be necessary? Leading celiac expert Alessio Fasano has stated at conferences recently that there is no purpose in having an endoscopy when the blood tests are positive, a person is symptomatic on gluten, and those symptoms resolve on a gluten-free diet. Due to the fact that an endoscopy oftentimes results in a false negative (because the scope may not be long enough to reach the damaged section, the surgeon misses the affected areas, or the pathologist may not be knowledgeable enough to read the results accurately), a false negative can cause a doctor to encourage a patient to continue to eat gluten because he/she feels that the patient doesn't have celiac when, in fact, that person DOES. The result is much grief for the patient.

Are you willing to risk your health for your doctor's satisfaction? Perhaps you need to present him with this information. Dr. Fasano was supposed to publish an article on this very subject in the past year, but I don't think he has yet. Still, I think your doctor needs to re-think his position on your endoscopy.

ravenwoodglass Mentor
ravenwoodglass
Posted

You have a valid concern. You have gotten great advice from the previous poster. You have a positive blood test, the choice to stay on gluten and then get the endo done is yours alone. Even if the endo is negative you still need to do a trial on the diet. With positive blood work and good response to the diet followed strictly and a decrease in your blood antibodies after you have been on the diet for a few months your doctor should give you a diagnosis, IMHO.

GFinDC Veteran
GFinDC
Posted

Regardless of what you decide about proceeding with the testing, there is no reason you can't start upping your vitamins now. You could start taking sub-lingual B-12 and a B-complex now and it might help with the nerve issues.

Skylark Collaborator
Skylark
Posted

Celiac can come on fast and you are not a prisoner to your doctor. The treatment is diet anyway, and you are in control of it. You have the positive blood test, which is enough to diagnose celiac-caused neurological problems anyway. You are early enough in the disease that you may or may not have a positive biopsy. A recent study showed that biopsy-negative people who have positive blood tests still have the altered metabolic profile of celiac disease anyway so the myth of a biopsy as gold standard is being slowly overturned. You absolutely have the option to tell your doctor you are comfortable going gluten-free for life based on only blood (assuming you are) and get the heck off gluten.

This is an article about the recent study. You might consider printing it and taking it to your doctor. Some like to keep up on recent news and doctors are too overworked in our current broken managed care system to always read as much as they would like.

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mommida Enthusiast
mommida
Posted

The previous poasters have given very good advice.

Can Celiac Disease get dangerously worse? Yes. Celiac crisis has been listed as cause of death/contribiting factor for 2 celebrities. Joey C. who was a longtime friend of Kid Rock. He also had other illnesses. The young girl from the Poltergeist movies.

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  • Recent Activity

    1. cristiana
      - cristiana replied to Scatterbrain's topic in Sports and Fitness
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      Feel like I’m starting over

      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...
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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
      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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