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Am I Celiac?

JamTart

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JamTart Rookie
JamTart
Posted

Hi- try to keep it short. I had a positive home test biocard for celiac, went to doc, had negative bloodwork but many symptoms and exceaaive weight loss. He wanted me to go gluten-free for a month to see it things improved. Anyway, it's been 3 week gluten-free and I got a bad sinus and eat infection eight after starting so haven't had a great chance to determine if I feel better, but my D has finally stopped, I have a but more energy, and (strange) I can have more than one glass of wine without feeling horrible and not being able to function for 2 days afterwards because of exhaustion and headache. My question is: tonight I accidentally reflexively ate a piece of white flour spaghetti while preparing my daughters dinner (the first gluten I know I've ingested since starting the diet) and as of 6 hours later I've had no reaction whatsoever - stomach, migraine etc. If I were celiac wouldn't I have some kind of telling reaction that I'd just ingested gluten?

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Cara in Boston Enthusiast
Cara in Boston
Posted

Sometimes the reaction is immediate, sometimes it takes days to feel it, sometimes there is no reaction at all.

I know this doesn't help you figure it out, but don't rule it out just because you didn't feel anything.

When I first tried the diet (2 weeks) I was feeling much better. My doctor decided he wanted to do an endoscopy so he told me to resume eating gluten (lots) for 3 days . . . I did, and I felt just fine. I began questioning the whole celiac thing. Had endoscopy (negative) and was told to eat gluten for 4-6 months so we could re-test. He thought maybe the 2 weeks gluten free was giving us a false negative. So I began eating gluten again and within weeks, all my symptoms were back. It was gradual, but eventually, I was right back where I started. I gave up on the gluten trial and just accepted a diagnosis of "gluten intolerance".

Now, after a year of being gluten-free, if I accidently ingest gluten, I feel it within hours and it lasts for days. Takes about a full week to get back to normal.

Cara

MitziG Enthusiast
MitziG
Posted

Yeah, it is very hit or miss with reactions, especially in the beginning. Part of what makes celiac difficult to diagnose. If everyone got sick immediately after eating gluten, it would be pretty obvious.

Get a copy of the labs your doc ran and post them on here. Id be willing to bet he didn't do a complete panel.

JamTart Rookie
JamTart
Posted
  • Author

Yeah, it is very hit or miss with reactions, especially in the beginning. Part of what makes celiac difficult to diagnose. If everyone got sick immediately after eating gluten, it would be pretty obvious.

Get a copy of the labs your doc ran and post them on here. Id be willing to bet he didn't do a complete panel.

Thankyou for replying! If you look under my other posts I have posted my lab results. He didn't test total IgA, which I think he should have, but maybe with my IgG tests it's not necessaary?

JamTart Rookie
JamTart
Posted
  • Author

I posted results in another posting- didin't check total IgA?maybe it wasn't necessary with the test he ran? Thanks for replying!

cavernio Enthusiast
cavernio
Posted

I too don't get noticeably immediate symptoms from eating gluten. Unlike you, however, I had positive bloodwork and now I have a positive visual.

I didn't even really notice how much better I HAD felt being gluten-free until I started to eat gluten again for my scope. And even then, it took at least a week for me to really notice.

Some common celiac symptoms I've never associated with eating gluten are nausea, diarrhea (coffee, excess sugar, and dairy can cause it, but never just bread or a roll or something), and headaches. I mean, I get headaches fairly often, but not often enough to be caused by every gluten-filled food I ate.

Things that got better was the parasthesia and bloating. But things like my period, and apparently I have IBS now too, and lactose, also gave me bloating and gas.

Energy levels, well, I got more energetic when I started supplement b vitamins and iron, even while eating gluten. And concentration levels...I really dunno about those yet. Too early too tell.

But yet here I am, full-blown, damaged intestines celiac!

Something to note, the antibodies that they test for in your bloodstream I don't think are ever supposed to be in your bloodstream. If they're there it means you've got some sort of leakage or something (which happens with most celiacs). If you want to be certain, get the biopsy. And eat as much gluten as you can, like, every meal and snack on crackers, for as long as you can before getting the gastroscope.

KMMO320 Contributor
KMMO320
Posted

I am new to all this too, about 2 weeks totally gluten-free but from what I gather here, other places online and from people I know personally, the short answer is:It's different for everyone.

My Sister in law feels the effects the next morning. A friend will feel it up to days later.

A month ago, I went gluten-free for just a week to see how I felt and at the end of the week, I ate something, I forget what, and within 2 hours I had really bad ear pain, a headache and nausea, as well as extreme fatigue.

I have been gluten-free for 2 weeks now, except for the other day I ate a donut and I felt...nothing. Nothing right away, nothing the next day. So I ate a piece of a muffin, I was trying to test myself..and again within hours, I had bad ear pain and later I got a migraine (which for me is optical, not painful. I couldn't see, my vision had gone all spotty).

So I guess its just different. You may be lucky and feel nothing, but it doesnt mean damage isnt being done on the inside.

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  • Posts

    • knitty kitty
      Struggling to get into a good pattern

      By knitty kitty · Posted

      @Rejoicephd, Would you consider adding a B Complex to your supplements?   I was taking a multivitamin and still became deficient.  There's a question as to how well multivitamins dissolve in the digestive system.   I found taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, very beneficial in my recovery.   Some B Complex supplements use Thiamine Mononitrate which is not well absorbed nor utilized by the body.  Thiamine Hydrochloride is better.  Benfotiamine is easily absorbed.  If not needed, the B vitamins are easily excreted. High B12 out of the blue could be masking a lack of other vitamins that work with B12, like Folate B 9, Pyridoxine B 6, and Thiamine B 1. Meats and liver are great sources of B vitamins.  B vitamins are needed to make digestive enzymes that digest protein, fats, and carbohydrates.   Do keep in mind that most gluten free processed facsimile foods are not required to be enriched with vitamins and minerals lost in processing like their gluten containing counterparts.  The more carbohydrates you eat, the more Thiamine is needed to process them into energy instead of storing them as fat.   Hope this helps!  Keep us posted on your progress.
    • knitty kitty
      almost a year in recovery - so many questions about to give up

      By knitty kitty · Posted

      @kopiq,  Your case is not hopeless.  Doctors are not required to learn much about nutrition.  Celiac Disease causes damage to the lining of the small intestines resulting in malabsorption of essential vitamins and minerals.  The eight essential B vitamins  and the four fat soluble vitamins (A, D, E, and K) are chemical compounds that our bodies cannot make, so we must get them from what we eat.  If we're not absorbing sufficient amounts from our food, then supplementing with vitamins and minerals help boost our ability to absorb them.  The B vitamins are safe and water soluble, easily excreted in urine if not needed or not absorbed.  Essential minerals are important, too.  Magnesium and Thiamine make life sustaining enzymes together.   Blood tests for the B vitamins are notoriously inaccurate.  By the time a deficiency shows up in the blood, you've been deficient for a few years. The best way to tell is to try taking a  B Complex and looking for health improvements. Taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, helped me immensely.  I also took Vitamin D and Magnesium Glycinate and others. Did your doctor offer any treatment to correct your critically low Vitamin D level?   Mine was lower than yours.  My doctor prescribed the less bioavailable form D2.  Our bodies utilize the D3 form better.  I bought over the counter Vitamin D3 supplements (1000 IU) and took several with each meal.  Taking high doses of Vitamin D to correct a deficiency is safe and very effective at improving health.  I started feeling better quickly.  Vitamin D helps regulate the immune system and lower inflammation, as well as makes hormones. Laying out in the sun cannot correct a Vitamin D deficiency unless you're below the 33rd parallel (on a tropical island with abundant exposed skin for several months).  Ultraviolet rays from the sun destroy the thiamine in the body.  That feeling of lethargy is because the sun exposure broke down thiamine into unusable pieces.  Thiamine and the B vitamins make ATP, the energy currency the body requires to function, to make digestive enzymes, to regulate body temperature, to think, to heal itself.  We need more Thiamine when we're outdoors in hot weather, working or exercising.  Thiamine deficiency doesn't cause heat stroke, but thiamine deficiency can make heat stroke symptoms worse.  We need more Thiamine when we're physically ill or injured or undergoing medical procedures.  We need more Thiamine when we're emotionally stressed or traumatized.  Anxiety and depression are very early symptoms of thiamine and other nutritional deficiencies.   Rashes can be caused by deficiencies in Niacin B3, Vitamin A, or Vitamin C.  Some rashes can become worse with exposure to sunlight.   The B vitamins are needed to make digestive enzymes that will help you digest fat and proteins better.  Meats are an excellent source of B vitamins.  Sweet potato and plantain are high in carbohydrates.  The more carbohydrates one eats, there is a greater metabolic need for thiamine to turn them into energy, ATP. Can your doctor refer you to a dietician or nutritionist?
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thank you @cristiana.  Its really helpful to hear your experience, thanks for sharing.  8 years is a long time!  And its also good to know that others have experienced worsening before it gets better.  I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my overall awareness of what I'm putting in my body. I will also message my GI doc in the meantime too.  Thanks, it's really helpful to talk through this.  
    • trents
      Help!

      By trents · Posted

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
    • junell
      Help!

      By junell · Posted

      I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea, lethargy, muscle and joint pain, kidney pain, headaches, and mouth ulcers. I've been told it's IBS, I think it's more than that... I've been sent to a gastroenterologist who tested for coeliac, if course it came back negative because, as I told him, I haven't eaten gluten for 5 years, he's asked me to eat gluten for 4 weeks and redo the blood test, so I've tried small amounts of crispbread for 3 days and am in agony, I can't do this for 4 weeks and then however long it'll take to recover. Has anyone got any suggestions, and is multiple food intolerances a common side effect of coeliac? I'm struggling! And struggling to be taken seriously 😒 
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