AmberJ
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9 hours ago, Alaskaguy said:
Hello All,
I have a question (don't I always?) for those with dermatitis herpetiformis who have longtime experience with the gluten-free diet.
How can you tell --- or CAN you tell at all --- between having a stray reaction to gluten vs. having a reaction due to having consumed a high (or a relatively high) amount of iodine, which we know does not cause but can aggravate DH? Are the reactions the same, and do they last a similar length of time?
I'm just wondering how one can distinguish between reacting to gluten vs. reacting to iodine, particularly after having been on a gluten-free diet for a year or more.
As a secondary question here, just how long might one expect to continue having DH reactions to high levels of consumed iodine after going on a gluten-free diet? I get the feeling that it is on the order of years, or even indefinitely, which is a depressing prospect to me. It's bad enough to have had to give up so many gluten-related foods (real, deep-dish pizza, I miss you!), but to face having to permanently or indefinitely give up seafood, yogurt, asparagus, milk and many other non-gluten-related foods is a real kick in the gut (no pun intended).
OMG I’ve having the same issue with dairy, sugars, even natural sugars like fruits! I’m following this thread. I really thought I was the only one! Thanks for asking it. My dr says I just need to go a good 6 months gluten/sugar/dairy free to “reset my system” and it should help. We’ll see.
Good luck to you sir!
AJ
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On 2/14/2019 at 10:46 AM, Danielle1719 said:
Hi everyone,
I was recently diagnosed with celiac about 7months ago and it has been a big adjustment, to say the least. After struggling a lot with all the changes I decided to check out this site to hopefully get some advice from individuals who are in the same boat with me. Prior to my diagnosis, I lost over 40lbs in a very short period of time and if I am being honest it was overwhelming but I was not upset about how my body was "looking" (I say "" because now I know it was not healthy at all). Now though, I have been living gluten-free and it's a completely 180. I started trying to incorporate healthy eating ( watching my macros and trying to incorporate more vegetables and lean meats) and exercise, which has been a new addition as before my diagnosis exercise was something I was terrified of doing because of one too many close calls with the bathroom. I will say I am definitely guilty of exploring the different gluten-free snacks and sweet alternatives at the grocery store occasionally, but even with all of this I've started gaining weight back (about 10pounds so far) and it seems no matter how much I exercise or try to maintain a balanced diet the weight is just hanging around. And on top of that I feel as though now that I've started eating gluten free my body is still all over the place in terms of digestion. Before obviously as many of you have experienced, had your fair share of diarrhea and bathroom explosions, but yet I was at least going to the bathroom and it was almost consistent, now it's like I feel as though I have to be so careful about the foods I consume because now my body is temperamental about its digestion in an unpredictable way. Which is frustrating in itself because not only do I have to be careful about what I eat but I also have to now be restrictive on the types of gluten-free foods I eat. Yes, my pain and crazy bathroom adventures have gone away, which I am so thankful about, but now it's the opposite and I feel out of tune with my body completely, I never know if I'm going to have a normal digestion day or if I'm going to not go to the bathroom for days. Has anyone else experienced this or am I just a lucky individual who has somehow felt more out of sync with her body since? And if so does anyone have any suggestions on how to handle this. Some days it can be so frustrating because though I feel better in terms of all the symptoms I was having before and my antibody levels have dropped significantly, It is still so defeating to see the scale go up even when I'm trying to restrict myself to a healthy diet and incorporate more exercise. I know that it is not necessarily a bad thing to be gaining some weight, because of the significant weight loss I experienced and everyone is telling me it's fine but it has certainly been a big shock to the system seeing my body change so much in such a short period of time and to feel like my body has a mind of its own and is running in circles with no consistency.
Hopefully, this all made sense. Thanks ❤️
I had a similar reaction (couldn’t lose weight then lost way too much after diagnosis...then a year later weight ballooned and I couldn’t lose it no matter what) BUT, I have found that my body hates sugar of all kinds. I went on the Whole30 diet at my doctor’s direction (no dairy, no sugar, no rice or other grains), and my bathroom habits straightened up, my energy skyrocketed, and my moods lifted. Took about 6 months on the diet though. I’d say give it time and try cutting something out that you wouldn’t normally think of. Celiac has far-reaching consequences, but even with just eating meat and veggies, I feel so much better that it’s worth it!
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I'm a first sergeant's wife (ret.). Yes, it disqualifies you from serving. If it is diagnosed during service, you will be med boarded out of the military because all MRE's and d-fac's are unsafe for a Celiac. I'm not sure about NOAA Corps.
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Yes, and I had to quit soda pop and limit lactose to get rid of it. It hurt so badly I would be sweating bullets.
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If it says "artificial flavorings" or "natural flavorings"...I will refuse to eat or drink it unless it says specifically that it's gluten free. The damage to my villi is not worth it.
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I was in an out of wheelchairs for 26 years - even had surgery on both feet - which did NOT work - and now since being gluten free, and eating mostly organic fruits and veggies, I am no longer in pain. The pain in my feet is mostly gone. I have eliminated gluten, as well as most caffeine, as well as soft cheeses, real whole milk (I use Silk), and yogurt. I still eat eggs, hard cheeses, and occasionally at my mom's, a limited amount of whole milk. The trick for me also though, is avoiding foods sprayed with a bunch of pesticides. Certified gluten free Cheerio's makes my feet hurt for days. Non-organic celery does the same thing. So the pesticides is the only thing I can think of. Keep trying different things. Don't give up. You got this!
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I'm unable to eat some things without gluten-type symptoms. I don't think it's gluten, I think it's pesticides and weed killer that's sprayed on just before harvest to make the harvest heavier and with less weeds. Cheerio's uses this. Wouldn't be surprised if this is your issue. Try some brand that's gluten free and organic, or use rice or quinoa as a substitute.
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1 hour ago, Stringcheese32 said:
I have always been passionate about drinking and trying new beers. Lately, when I drink just two beers I find that I'm waking up several hours later feeling unbearably hot (but unable to sweat) and so nauseous. It lasts for about an hour or two and then I can manage to fall back asleep. I wake up in the morning feeling really sore and incredibly fatigued. This happened periodically about 10 years or so ago, but now it seems to happen every single time I drink (which is not super often). Has anyone else experienced this? Any ideas what's causing this? I haven't been formally diagnosed with Celiac Disease, yet, I still need an endoscopy (but positive DGP IgG and DQ7, 8 and IgA deficient).
Beer is gluten. Beer is a no-no for NCGI or Celiac patients. Try wine, most are gluten free.
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You may have a lot of strange symptoms for the first year. Your body is healing! But as for frequent diarrhea, it could be just the detox from gluten. I know it sounds crazy, but I had diarrhea, anxiety, and sleep disturbances often in the first month after going gluten free. If you're anything like me, it'll be a thing where you KNOW you got glutened when it happens. Diarrhea, while still a symptom of it, is in and of itself different than getting glutened. When I get glutened I get what I call "angry bubbly gut", like there's hundreds of loud, aggressive, angry bubbles in my gut. They can be heard from across the room as they round the corners of your intestines.
Please keep in mind that these first few weeks are going to be different, sometimes uncomfortable, but just overall different.
The body can only really deal with one issue at a time. If your toe is cut off, and you have a large cut on your finger that's healing....you'll feel the toe. If you have a dairy allergy and Celiac Disease, your body will just keep slugging along, and when elimination of gluten eases the body's load, only then can it deal with the dairy allergy. That's just an example but I hope you know what I mean.
A good idea, endorsed by all my doctors, is to track as much as you can. I opened a new calendar on Google just for health. I'm sure there are apps that will do it for you. I track when I have BM's, any strange symptoms, what I ate before I got sick, etc. On more than one occasion it has helped me individually to track what patterns exists between how I feel and what I eat. Not to mention that it's extremely to doctors.
I wish you luck, the next year will be a journey but you will learn a lot and get better!
Be well! Much love!
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Sorry for my type-o, I'm on my iPad and I have fat fingers apparently, LOL.
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I'm so sorry you're going through that. I'm just about going on a year since my diagnosis.
I don't eat out. Just went on vacation, and when handed a gluten-free menu, I asked if they prepare it on a separate part of the kitchen, and if they didn't know, or if they said no, I didn't eat anything. I'm becoming a pro at watching people eat. It helps to keep a small jar of peanut butter and some gluten free crackers, or bring a Tupperware container of grapes and cheese in my bag...I just eat what I brought rather than buying anything. No one has ever said anything to me about me bringing food when they don't have anything that is safe for me to eat. It also helps to eat substantial food before I go, so it's not agony smelling all the scents. I was amazed that I managed to go 9 days of airports and family get-togethers without being ill!
When I get glutened, it helps to get a washrag and pour rubbing alcohol on it, and lay it on my pillow. The smell is strong, even stronger than when you're not nauseated, but the chemicals in the brain resist the vomit motions when you smell rubbing alcohol. I don't know how it works, but it really does help. Also, drink fluids...water, chicken broth, etc....to stay hydrated. The less hydrated you are, the less likely this will pass quickly.
You have to take care of yourself! Avoiding gluten is likely remembering to eat or bathe...its self-care! I know it's difficult when in the middle of divorce or other super stressful times...but seriously, take care of you! You are worth it!
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Yes. The connection between gluten and the thyroid is strong. And the connection between sleep issues and the thyroid is strong. So it's not unreasonable to think the issues are connected to gluten.
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I have always had depression. On medication, etc. since I was about 12.
But since going gluten-free, I've been off my medicine and doing great!
When I get glutened by CC or whatever, I end up feeling enough depressed that my husband tells me I need to remember it's just my body responding to gluten, and we talk about where I may have gotten glutened. We can ALWAYS find something that is the probable place of CC. I can tell I'm down, but it's significant enough that he can tell too. It persists for a few days and then gets better.
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I wouldn't if I were you. The black eyed peas from New Year's Day meant 4 days of misery, based upon that guess......
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7 hours ago, LookingforAnswers15 said:
Hi, i have a question regarding looking for a job. This is the first time that I am applying since being diagnosed and I am not sure what to disclose. I was so disappointed that some job applications even ask if an applicant has any "chronic" issues. I feel it is discriminatory. Also, after you are offered a job, you have to have a physical exam. If I understood correctly, getting a job is dependent on this. I am so confused by all this. As you can see from online, I have had a lot of issues but i should be able to work and these positions are administrative, not physical in nature. So, my question is how do I proceed if offered a job? Since I am only diagnosed with celiac as of now, do I just mention that?
Yes, list it under conditions. If you feel comfortable doing so, state that it's just like a food allergy and provide that you will take care of your dietary restrictions and it will not limit your ability to perform the functions of the job.
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1 hour ago, bartfull said:
Hi and welcome.
Unfortunately gluten withdrawal is very real and it sounds like that's what's going on with you. Headaches, mood swings. insatiable hunger, and a general uneasy feeling as if something bad were going to happen any minute now, are all symptoms of withdrawal.
For some folks it lasts a week or two. Some folks have it for a month or more, but here's hoping yours leaves quickly.
Since you're new at this, go on over to the Newbie 101 thread pinned to the top of the coping section here and you'll earn a lot about our disease, the diet, and avoiding cross-contamination. Then come on back and ask as many questions as come to mind. We're here to help.
He's right. I had withdrawals for a couple days like you're describing. And then a little irritability off n on for a few weeks. But it DOES gets better! In no time you'll be feeling much better! Keep in mind to be gentle with yourself, as your body is addicted to a substance that, in essence, has the capability of shortening your lifespan by 20 or more years. I thought of mine as a drug addiction withdrawal (full disclosure: not an addict, but a cousin is and withdrawals are hard!), and once I started thinking of it that way, I was able to take it easier. I drank broth and lots of extra water, and got extra sleep. It helped me. Here's hoping you're feeling fantastic soon!
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6 hours ago, 1398_Days said:
I've only been gluten free for about 4 months, and up until now the thought never occurred to me that their products could contain gluten. I use several of their products including the hand soap, body cream, shower gel, hand sanitizer, perfume, etc.. and I've never gotten sick or had any reaction to them. Does it matter if I use them if they don't bother me? I've had to give up a lot of things since being gluten free, so I guess I just don't want to have to give up this too
Also, I don't know if I have Celiac. I've been putting off getting tested because I'm kind of terrified of purposely glutening myself every day for weeks. So as far as I know right now, I'm just gluten sensitive/intolerant. Don't know if it makes a difference, but I figured it was worth mentioning
Hello! My whole family has found out about Celiac in the last year so we're relatively new to the gluten-free life, too. (Some of us are diagnosed, some not.) Here's my take: if you are intolerant or Celiac...either way, your body hates gluten. I don't use them, but my mom does. It affects what I call acne. (I'm 34...always had acne but it cleared up when I went gluten-free.) My mom uses Bath & Body Works. She stopped the hand cream and sanitizers and uses butt inspection gloves when she applies the body cream. It's a happy medium for her. I began using beeswax since it's all natural. My brother found a different lotion and so did my sister. No worries! I like to say, "You do you. I'll do me." in relation to what limits we impose upon ourselves. Whatever works!
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So sorry! I was taken out of recruitment because of cancer. So I know the feeling. Think about what job you wanted to do, and go to school for that. Civvy contractors make seriously larger pay checks. ?
Desperate for Help.
in Post Diagnosis, Recovery & Treatment of Celiac Disease
Posted
I’m Celiac so it may be different...but have you had your gallbladder checked? I had issues with meat fats and any junk food when my gallbladder went bad.