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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
      SkinSafe

      By trents · Posted

      Welcome to the forum, Linda! Many on this forum can sympathize with you. It can be extremely difficult to get reliable information about gluten when it comes to meds, supplements and oral hygiene products. This is especially true since so much of this stuff is generic and comes from over seas. I will deflect with regard to your question about meds and oral products but take you in another direction. Have you tried a low iodine diet. Iodine is known to exacerbate dermatitis herpetiformis and some find that a low iodine diet helps reduce the number of outbreaks. By the way, have you had your celiac antibodies retested recently? If they are elevated that might be a clue that you are getting gluten in your oral hygiene products or meds.
    • Itsabit
      SkinSafe

      By Itsabit · Posted

      Hi. I’m 70 years old, and a 22 year survivor of head and neck cancer treated with chemo-radiation, which resulted in non-existent submandibular salivary glands and extreme dry mouth and altered oral mucosa. I have been using dry mouth toothpaste, Rx oral dentrifices and moisturizers for years.  I’ve recently been diagnosed with severe celiac dermatitis herpetiformis. I was being treated with oral Dapsone, but it was not effective and I developed some serious side effects. So, the medication was stopped and I was started on Doxycycline (another antibiotic) for inflammation. I’ve been using Rx Betamethasone steroid ointment with little to no effect. I have tried every oral and topical antihistamine treatment available OTC. None have touched this horrible relentless itching. That is my history.  Now to my question. Does anybody know about gluten free toothpastes and mouth moisturizers? I ask because a very common dry mouth brand stated to me that they were indeed gluten free. But as I am not getting any better with my dermatitis herpetiformis, I was wondering if I was getting glutenized some way other than diet as  I have been following a strict clean gluten free diet, but I am not seeing any improvement at all. So, I started looking up the toothpastes and moisturizer ingredients individually and nine (9) of the eleven (11) or so listed showed up as   containing gluten or that may have gluten! Am I getting glutenized orally by these products?  As an aside, I checked on my favorite lavender scented baby lotion which is supposed to be gluten free, but many of those ingredients when investigated separately, show they  do contain or may contain gluten as well. I stopped using the lotion. But I cannot forgo my dental care. I was unable to get any information from the manufacturer of my current brand of chewable multivitamins either. They told me to check with my doctor. If THEY don’t know what’s in their product, how do they think a PCP will?  In light of all this, I am confused and angry that I might keep getting contaminated with gluten through products I am using that are supposedly gluten safe. *I should also state that I have a nickel allergy since I was about 12-13 years old. And I developed a contact allergy to latex (gloves) when I was a student nurse at 19 years old.  I know and I’m sorry that this is so lengthy. I’m trying to do everything I can to combat this condition, and I’m feeling very confused, anxious and angry about not getting adequate information as I try to educate and advocate for myself. I’m hoping someone here is more knowledgeable than me of how to navigate through all of this. Can anyone offer any advice?  Thank you for your time.  Respectfully,  Linda
    • trents
      I’m terrified it’s too late for me😭

      By trents · Posted

      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’m terrified it’s too late for me😭

      By Cathijean90 · Posted

      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      diagnostic testing variance

      By trents · Posted

      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
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