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So Sick

Kathyl067

By Kathyl067
in Coping with Celiac Disease

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Kathyl067 Newbie
Kathyl067
Posted

I'm so tired of getting sick.... It comes and goes. I have been diagnosed with Celiacs , doctor says give it time, so I decided to get another opinion . Can't get in to see doctor until end of March. Some days good, some really bad. Light headed , dizzy, feel like I'm going to vomit but just the watery mouth thing. So constipated but linzess and others make me even more sick. Can't seem to find anything that even taste good . Just want to curl up in ball and cry... So frustrated . I hate this....

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moosemalibu Collaborator
moosemalibu
Posted

Hi Kathy,

 

I'm sorry you are having a hard time. A lot of us started out that way too. Do you know how your doctor diagnosed you with Celiac's Disease? Was a biopsy and blood test performed? If you have access to your test and results it would make it easier to see if a second opinion is really needed. I know it can be hard (from experience) to accept this diagnosis and this disease but you are at risk of further illness if you do not follow the gluten free diet. 

 

::Hugs::

 

Jamie

cyclinglady Grand Master
cyclinglady
Posted

Hang in there! Jamie has given you excellent advice. I can tell you that you will feel better, but it is going to take some time. Focus on you. I cut back on volunteering and housework/projects and just concentrated on my family and my diet. The transition was relatively easy for me since I had been cooking gluten-free for over a decade.

Ugh! I had the flu too. Fever for five days and three weeks total of fatigue. Then I picked up an intestinal virus that lasted for five days and was worse than the flu. I am done with being sick! Today is my first good day since the new year!

It a real grieving process that you must go through.. I was so shocked to get my dx. What? No, it is my husband who can not have gluten -- not me! Now, my health has greatly improved. There is hope!

Take care!

bartfull Rising Star
bartfull
Posted

Kathy, have you read the Newbie 101 thread? It'll teach you a lot about celiac and how to avoid cross-contamination.

1desperateladysaved Proficient
1desperateladysaved
Posted

I started out feeling hopeless and overwhelmed. I feel better.  Sometimes my hardest days were followed by my best.  Hang in there.  You're working on healing, even if you can't tell it yet.

 

D

MissHaberdasher Apprentice
MissHaberdasher
Posted

As cyclinglady said, it is one heck of a grieving process. Just keep on going, and just go day by day. Stay strong, my friend, we've all been there. We understand what you're going through. *hugs* 

NoGlutenCooties Contributor
NoGlutenCooties
Posted

 Light headed , dizzy, feel like I'm going to vomit but just the watery mouth thing.

 

By any chance, are you taking iron?  If I take iron without taking it with enough food it will do this to me... my salivary glands go nuts and I get naseous and dizzy.  In the past it has made me vomit.  If I take it with a good amount of food, it's fine.

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quincy Contributor
quincy
Posted

I was quite ill for a while before and after diagnosis.  I kept asking the Gastro doc if there could be anything else going on. It turns out several years later I was dx'd with Lyme disease.  If you have spent time outdoors hiking, gardening, camping, especially in Lyme infected areas like Northeast, Mid-atlantic or Midwest, I would get a Lyme Western Blot test done through IgeneX, Yale or Stonybrook University labs.  Just adding my opinion, because I was attributing all of my symptoms to celiac when in fact they were Lyme.  

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      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
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