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Hope I Have Celiac...what Else Could It Be?

jennyo

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jennyo Newbie
jennyo
Posted

My blood panel came back negative, but I do have one of the genes, so I went for a biopsy last week. I'm so hoping for celiac disease because if not, we're back at square one trying to get some kind of cause for what's wrong with me. I'm worried that I didn't eat enough gluten before the biopsy. I was planning on it, but I got the biopsy scheduled so quick I didn't get a chance to beef up my gluten intake. The night before I ate about 10 ginger cookies though so hopefully that did enough damage!

So here's my question. I obviously have some kind of malabsorption going on. I have lost about 30 lbs over the last few years and eating more than ever. No GI symptoms though. Infertility issues, and when I finally did get preg via IVF, my poor baby wasn't thriving in the womb. They had to induce early because he wasn't growing enough. It appeared that I was malnourished, but I am the healthiest eater of anyone I know! Any suggestions on what else it could be if not celiac??? Any ideas would be greatly appreciated. I feel like I"m dying here, and I'm so embarrassed to be around family. I have no friends left either because I avoid situations where people will comment about me looking sick, or being so skinny.

I also have low red blood cell count, low white count, and low platelet count. Literally, I am fading away! :huh:

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ShayFL Enthusiast
ShayFL
Posted

I would try gluten free diet no matter what the tests show. What do you have to lose? It sounds like nothing.

Also avoid dairy and soy for 3 - 4 months. Let your body heal. It can.

jennyo Newbie
jennyo
Posted
  • Author
I would try gluten free diet no matter what the tests show. What do you have to lose? It sounds like nothing.

Also avoid dairy and soy for 3 - 4 months. Let your body heal. It can.

How did you know how to do all that? Your own research or did you see a holistic nutritionist or someone? I think I do definitely have candida too -- I did a home test. I was going to wait and see if I got a celiac diagnosis and then do a candida cleanse too. But, there is definitely something else going on. I plan on going gluten-free regardless. But, I do so want some kind of diagnosis, even if it's an allergy or something. Thanks for the reply! (...hope I'm posting this in the right place--still new at this)

*lee-lee* Enthusiast
*lee-lee*
Posted

were you gluten free before the blood work? that'll cause a negative result just like it would the biopsy.

jennyo Newbie
jennyo
Posted
  • Author
were you gluten free before the blood work? that'll cause a negative result just like it would the biopsy.

No, I have never gone completely gluten free for more than a day. I would say "gluten-light." Meaning, no cereal in the AM, but still a sandwich for lunch. Maybe 2-3 glutens a day for the month before the tests and biopsy. Is that enough to still show damage? I've been "sick" for at least 10 years so there has been plenty of damage over the years. Hopefully that'll still be there despite toning down the intake recently.

*lee-lee* Enthusiast
*lee-lee*
Posted

i'm no expert...but i think you can have a false negative and still have Celiac. did the doctor say anything after the biopsy? mine wouldn't let me leave the hospital before he briefly reviewed his findings (which was no visable damage but the samples were being sent off to a pathologist for further inspection). he also gave me a print out which included pictures of my insides - kinda gross but cool if you like those types of things!

jennyo Newbie
jennyo
Posted
  • Author

False negatives--how annoying! She reviewed the findings with me after the endoscopy, which was the same --no visable damage but sending it off. Oh yeah, and acid damage from a hiatal hernia (great). Anyway, can they usually see damage at the surface? I'll be so bummed if the biopsy comes back negative.

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*lee-lee* Enthusiast
*lee-lee*
Posted

i'm not sure what they can and can't see when they're actually doing the procedure.

i cried when i got the negative result back. the last thing i did was test for the genes, which i have 1 of. Still not enough for an official diagnosis but i feel so much better not eating gluten so i've come to grips with it.

does your doctor have any other ideas if they rule out Celiac?

jennyo Newbie
jennyo
Posted
  • Author

I don't think she knows what to do if it's not Celiac. I don't know, she said something about referring to a nutritionist to see if I'm eating enough calories, which means I guess she thinks I'm lying about how much and how healthy I eat. Plus, what can explain the low blood cell counts and low platelet counts? It definitely looks like some kind of autoimmune thing to me. I'm hoping someone on here might have some ideas of where to go next. The Hematologist is pretty much done with me, she sent me on to the GI. If it's not a GI issue, I don't know...

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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