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JenniK

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by JenniK

  1. JenniK
    P.s. on the topic of feeling unfairly fat, I forgot to add that i don’t even eat gluten-free substitute foods. I discovered most of them make me sick, and they are almost all empty calories with almost negative nutrition. I prepare almost everything i eat myself, and mostly it comes out basically low carb: meat, spinach, eggs. i think mine is s...
  2. JenniK
    Kristi, I definitely relate to how you’re feeling in so many ways. I, too, feel the social and family burden of my disease, and it gets really discouraging sometimes. My husband and i have also been married 24 years, and he, like yours, tries to bring me things he thinks I can have. My kids have been sympathetic and supportive, but they all also just w...
  3. JenniK
    I’ll share my experience with DH and shingles, just FYI. I have been diagnosed celiac by a GI and have had maybe a year or more of constant DH before i went gluten-free for my stomach issues. (Self decided to try to see if gluten-free helped that.) Well, what a surprise that in addition to all the other symptoms disappearing, all the acne like bumps on m...
  4. JenniK
    My GI did. If you see my recent posts, you’ll see that I was surprised as well. My GI diagnosed me (with great certainty) based on history of symptoms- mostly diarrhea, mouth sores, arthritis pain and DH rash (which completely disappeared for two years while gluten-free and then flared during a short challenge.) I DID have a history of inflammation markers b...
  5. JenniK
    i was diagnoses this year, but was gluten-free for a few years before in order to try and heal myself even without a doctor suspecting celiac. I was always told i had IBS. I am normal weight to 20 extra pounds- not obese, not skinny. I take zero meds for anything, so it seemed like i wss also ‘just tired’, but i never felt right. I quit gluten to try...
  6. JenniK
    EDIT: i think i found the answer. I was confused. You ordered Imaware, not Alcat. Still interested in results. Is there any update on the Alcat test? Did you like the process/ results? I looked at the website and ca’t figure out where/ how to order it. Is it a home test, or does one still need to find a lab for a blood draw?
  7. JenniK
    I’m trying to decide between enterolab and 23andme. Both have their pros re: the other results that come with the genetic ones. 23andme has a whole list of other genetic predispositions, and it would be interesting to know my ancestry. Does knowing all those other medical predispositions lead to a constant feeling of waiting for something to go wrong though? ...
  8. JenniK
    I would like the genetic testing. I want to try the at home ones since it is easier and actually cheaper than getting a doctor to order it somewhere. Which one do you all recommend? Most of the ones i have seen are testing for Iga, etc, but that is not what i need at this point, is it? If i am a week back gluten-free after a 5 week challenge, would those...
  9. JenniK
    Interesting point about the health and life insurance rates. Good to know. At this point, i am six days into being gluten-free again after the challenge, and feeling better every day, so i think I will just go with the suspected diagnosis and be happy with that. I would like the genetic testing. I don’t remember why the doctor didn’t push harder for...
  10. JenniK
    I would like to have the genetic testing done too. When i looked at Enterolab, the only options i see are stool testing. I don’t see anything anywhere about cheek swab. If it is there, would you let me know?
  11. JenniK
    Thanks. In other news, for months i have been making my own granola with just gluten-free oats, butter, honey, brown sugar and salt mixed together and toasted. It’s delicious!
  12. JenniK
    What about Kellogg’s Rice Krispies and Cocoa Krispies? i thought they were safe? I like their texture better than Chex
  13. JenniK
    Hi, i had my GI appt recently, and need advice on whether to do the endoscopy or not. The full details are below, but here is the short issue. After many years of symptoms, which completely resolved when gluten-free, then completely returned during a challenge, i saw the GI. After reading my chart and listening, he immediately said, “you have celiac.” He...
  14. JenniK
    He did add it to my notes, as suspected. When i asked about needing the biopsy to put it in my chart, he said he would write in there Suspected Celiac. I think after so long of trying to figure this out for myself and ‘guessing’, fitting together the puzzle pieces, i need to tell myself that an expert’s guess is good enough even if i didn’t go through...
  15. JenniK
    Below find where i copied my own post from another thread on DH, which i posted this morning. What i can say in summary about healing the DH is that mine never responded to any creams, but did go away on its own pretty quickly after going gluten-free. I would say it was a matter of weeks. I think almost immediately it stopped itching and new bumps stopped...
  16. JenniK
    Hi Ella, This could almost be my exact story, and I am currently in the same position re: diagnosis dilemma. i had DH missed by a dermatologist which I will explain in next post. just yesterday, i finally had my first GI appointment, and I also don’t know that to do/ think. 19 years ago i was first diagnosed with IBS due to chronic diarrrhea, ...
  17. JenniK
    I Did go to a “well respected” derrmatologist when i had a huge outbreak of what looks exactly like DH a few years ago. My whole back was covered for probably a year or more, no matter what i did. I actually thought i had a staph infection. My GP was concerned enough to send me to a derm, bc she thought the derm would know better than her. The der...
  18. JenniK
    Hi all, I have been challenging for five weeks now and first GI is tomorrow. I have had a return of so many symptoms which I had actually forgotten that I had after 2 years gluten-free. I do want to find out what’s wrong, especially for the sake of my three sons, if what I have is genetic. But I am ready to go back to gluten-free. I’m already worried tha...
  19. JenniK
    Can we talk about what this idea of healing the gut actually means for celiacs? This is what I surmise may have happened to me, but I don’t know what it means as far as what changes to make for the rest of my life. I have been gluten free for about 2.5 - 3 years, and almost all of my issues completely cleared up. Now I am mid diagnosis and doing a c...
  20. JenniK
    UPDATE: Thanks to all of you for your helpful suggestions. My blood tests came back showing my B12 levels are in the normal level, but barely. So I am adding those vitamins. my Sed Rate was elevated. My celiac panel was negative, but of course it was bc I had only had a small amount of gluten a few times in the month before the test. (The...
  21. JenniK
    Thanks for all the info. I do use a lot of fresh ginger, so that is interesting. But I have used it daily for a long time with no sores both before and after the flare, so ??
  22. JenniK
    Yes. That’s why i wanted my doctor to see when i inexplicably had a whole mouthful at once instead of just telling her that i get them. Even if it doesn’t mean Celiac, it clearly means something. Now, she is hoping that I still have them when my GI appt rolls around. Of course, if you ask me, I’d rather NOT still have them in a month...
  23. JenniK
    Thanks. lysine is something I have used in the past, but I had forgotten about it. Yes, with the shingles and Bell’s Palsy, etc, it is interesting how often these supposedly unrelated “randomly triggered” issues strike in the same body. I hope you’re clear of them now.
  24. JenniK
    I can drive on the highway again, but I don’t like to at all, and avoid it if I can. Since the vertigo usually got triggered by sharp head movements, it got triggered while looking to lane change on the freeway. It only happened a few times while driving, but now my brain has made the correlation, and I am just afraid that it will happen again, so I get a...
  25. JenniK
    Hi, thanks to both of you for your opinions. My reasoning for considering the gluten challenge and testing is that although I know gluten-free helps, there are legitimate reasons to suspect that my gut was damaged earlier (including living for 7 years in a third world country) and thus, to wonder if it has healed or can ever heal. The question being...
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