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Do I Have celiac disease?

Guest Cherryl

By Guest Cherryl
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest Cherryl
Guest Cherryl
Posted

This is my 1st time on a message board. Myself, like a lot of you have been to several Dr's. I 1st went to GP with abdominal pains, diarrhea and fatigue, he sent me to a GI. Was diagnosed with an Ulcer and put me on several meds for 2 months. The diarrhea continued. Went to my GP again tried several meds and a stool sample for parasites it was negative and they said we don't know what to tell you. That was a year and 1/2 ago, I gave up and decided to live with it.

Decided to do research on my own and came across celiac disease, I'm still not sure this is what I have but my symptoms are the bid "D" (sometimes I will go right after eating) at least 3 times a day even up to 8, lower back pain, stomach pain, fatigue, gas, bloating, rash in my armpit, I get cracks in the corners of my mouth. I also went to donate blood when they put the drop of blood in solution to test for iron it floated (supposed to sink).

Also my son (21 years old) has heartburn and indigestion daily, said he always feels tired and has headaches a lot. His son is 6 months old and was diagnosed with acid reflux at 1 month old when he could not keep anything down. When I babysit him I notice he will start crying and I pick him up and he passes gas. And my dad had stomach problems all his life before he died, they said he had ulcers.

I'm just wondering if I should try the Gluten free diet on my own or try and find a Dr the will do the blood test and biopsy. I really want to know if it is celiac disease if not for myself for the sake of my son and grandson, so they will not have to suffer for years being misdiagnosed.

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jerseyangel Proficient
jerseyangel
Posted

Hi--welcome in! Your symptoms could very well indicate Celiac, in my opinion. In fact, I had many of the same issues you do. If the diagnosis is important to you, I would suggest NOT stopping gluten and make an appt. with your doctor. List your symptoms and tell him/her that you want to have a celiac panel (blood work) done. Then, you can make a decision on whether you feel the biopsy is necessary. Although the biopsy is considered the "gold standard" in Dx Celiac by most doctors, it can rule it in, but not rule it out. Good luck :)

Rachel--24 Collaborator
Rachel--24
Posted

I would recommend finding a doctor who is knowledgeable about Celiac and get the bloodtests done. Make sure they give you the full "celiac panel"...it consists of 5 tests. If the bloodtest is negative or inconclusive I would then try the diet. The tests aren't foolproof so even if negative you may find your symptoms imrove on the diet.

Canadian Karen Community Regular
Canadian Karen
Posted

Hi Cherryl!

Welcome to the board! I am glad that you have taken matters into your own hands and done some researc on your own, since the medical establishment in general is years behind in educating doctors about celiac disease.

It certainly does sound like you could have celiac disease. Your question about whether to just try the gluten-free diet or go through all the testing, well, I guess that depends. Some people require an "official" diagnosis either for insurance purposes, disability, etc. Others, a positive response to the gluten-free diet is proof enough that they have it. Whichever avenue you decide, I strongly suggest you pursue this further because you have alot of the classic symptoms.....

Again, welcome to the board!

Karen

Guest Cherryl
Guest Cherryl
Posted

Thanks for the reply's and support. I think I will try a find a doctor that will do the blood test and biopsy.

I have another question, when I saw my GI he did a colonoscopy and EGD that's when I was diagnosed with an ulcer and he said part of my stomach was inflammed. Would the EGD have shown celiac disease or do you have to have a biopsy to get an accurate diagnosis?

Canadian Karen Community Regular
Canadian Karen
Posted

A biopsy taken during a endoscopy (down the throat) is how they test the villi to confirm celiac disease.....

Karen

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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.   
    • knitty kitty
      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.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
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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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