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Positive blood test waiting for biopsy, are my symptoms "normal" for celiac and how can I get relief while waiting to go gluten free?


Brandi Marie

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Brandi Marie Newbie

I have recently had many different symptoms that finally led the dr to do a blood test for celiac. My belly looks 7 mo pregnant, I get sick after I eat, headaches, stomach pain, nausea, vomiting, joint pain, emotional changes, severe fatigue and weakness. Im just wondering if anyone has ever experienced these types of symptoms to the severity that I have. A few people have told me that a friend has celiac but all they had was diharrea and stomach problems. I seem to feel more systemic symptoms. While waiting for the biopsy it feels unbearable. I'm not able to go about my daily life anymore. Is there any way to reduce symptoms while still eating gluten (until I get the biopsy)?


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GFinDC Veteran

Hi Brandi,

Welcome to the forum!

You can try eliminating dairy for now.  Dairy is often a problem for celiacs.  I don't know where you are but if you can get peppermint tea that may help with getting gas out of the stomach.  Pepto Bismol and aspirin can help with pain.  If you are having trouble sleeping you can try adjusting your diet to only eat foods without gluten in the afternoon.  Keep eating the gluten in the morning and maybe the food symptoms will mostly be lessened by bedtime.

You do need to keep eating gluten until the testing is complete and should wait until the test results are received before going gluten-free.  A nice box of wine might help with sleep also. :D

Many forum members have had symptoms like yours and some worse than that.  The symptoms should start to decrease after going gluten-free.  But they often don't go away completely for quite a while.

squirmingitch Veteran

If I had a dollar for every time I've read a celiac say they have (or did have) belly looks 7 mo pregnant,  get sick after they eat, headaches, stomach pain, nausea, vomiting, joint pain, emotional changes, severe fatigue and weakness, then I would be rich! There are many more common symptoms that many had (or have).

Personally, I could add to that list; gas, belching, make the headaches migraines, dizzy, brain fog, bone pain, swelling, severe memory problems just to name a few.

 

Jmg Mentor
16 hours ago, Brandi Marie said:

  Is there any way to reduce symptoms while still eating gluten (until I get the biopsy)?

If you're not already start taking a good multi vitamin and it won't help reduce symptoms but you could use this time to savour any gluten filled foods you enjoy. 

Good luck!

jbeilfuss Newbie

Hi Brandi,

Welcome.  Here's hoping your biopsy is not too far off - it's tough to grin and bear it while you wait.  I have had those symptoms minus the vomiting.  In fact, when I describe what it is like for me to be glutened to somebody, I usually tell them it is like having the real flu (not food poisoning) where your body aches and there is extreme fatigue, joint pain etc.  As for the bloating, yes to that one too.  I had to undo my pants while driving home one day - ugh, they were so tight from the stupid bloating!

When I got my diagnosis, I also found I was lactose intolerant, so laying off of dairy will probably help you.

When I got ready for my biopsy, I tried to get just enough gluten foods.  If I went overboard (as in jumbo slice of Costco pizza), I paid for it.

 

Good luck!

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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