Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Having Some Problems


EricaM15

Recommended Posts

EricaM15 Rookie

I self-diagnosed myself with Celiac. I saw several doctors in the past, was tested for Celiac and was negative, never received an endoscopy. I was diagnosed with anxiety/depression when I was 10, then IBS-D when I was 20, and finally PCOS at 21 (I'm now 22), although I realize I've experienced symptoms of all of these since I was at least 13. The IBS probably started when I was much younger. After doing my own research, I took it upon myself to begin an elimination diet.

 

When I was at my worst, I lost about 25-30 pounds from lack of appetite that was caused by the IBS symptoms. People have always told me I was thin, although at my heaviest, I was 135 lbs (I'm 5'5"), which is supposedly average weight. I appeared thin because I carried all my weight in my abdomen and wore baggy shirts to hide it. At my lowest weight, I was around 105, and now I'm 113. Now I'd love to gain the weight back that I lost, especially since it seems to be redistributing to my arms, legs, and hips, but I'm having trouble because of how limiting my diet has become.

 

I've been a vegetarian for about 8 years now. I've tried eating meat again, but it makes me feel bad, both physically and emotionally. Before I realized I was gluten intolerant, I knew I was lactose intolerant, but often ignored it. When I decided to go gluten-free, I realized I had to eliminate all dairy as well because I became even more sensitive.

 

I was doing well with my gluten-free vegan diet for about a month until I started to notice my symptoms resurfacing--the IBS came back and my period came about three weeks late, meaning the PCOS symptoms had returned. I assumed it was associated with rice, quinoa, and other grains since I was eating a lot of those, so I decided to eliminate all grains. I had reached 117 lbs, but as soon as I eliminated grains, my weight dropped to 113 and has stayed there for the past 2-3 weeks. At the same time, I eliminated legumes for about three weeks, and was basically living off of fruits, vegetables, nuts and seeds. I basically became raw vegan. I felt great for a while, but started getting anxious that I wasn't consuming enough calories. It was also causing my anxiety disorder to resurface in some ways, although it's possible that the anxiety was caused from having the flu about two weeks ago.

 

Last week, I tried to reintroduce legumes (beans only; no soy or peanuts). The first time I ate them, I had some gas and bloating, but nothing else. I figured it was fine since the irritation stopped after that and I didn't experience any diarrhea, so I've continued eating them this past week. However, I noticed that I now have dark circles under my eyes, I get tired more easily, and I get a small headache around the same time every day. I assume this means I'm sensitive to legumes as well, so I've come here to ask--how can I consume enough calories to gain weight on such a restrictive diet? I'm basically back to where I started three weeks ago--raw vegan, only this time it's not intentional. I'm not against eating cooked vegetables, but I'm a full-time student and also work 20 hours a week, so eating raw is basically a time saver for me. Cooking the vegetables wouldn't necessarily increase the caloric value anyway. I have a green smoothie every day for breakfast, a ton of nuts and seeds throughout the day, at least one avocado a day, lots of green leafy vegetables. I don't know what else to do, so any suggestions are welcome. Is it possible that I'll recover from some of my allergies? If so, how long would this take?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

First off, i believe your intolerances may go away.

 

I dropped about 40lbs in a little over a month when i was at my worst.

 

At my lowest of the low after starting the gluten-free diet, i was eating peanut butter and apples (or lettice), boiled chicken, rice, sweet potatos, cheese, and some steamed veggies.

 

This is not healthy. If i tried pretty much anything else my GERD would decide to act up.  I was quite sick during this time.

 

Eventually, i had to stop taking the medications for it before it settled down to a more reasonable pace (i have more days of no GERD than i do of GERD, drastic improvement).

 

The only thing out of that lot i listed that i can't tolerate at the moment is the sweet potato.

 

You probably know this already but you cannot keep that pace up, especially feeling like crud. I a a full time college student (21 credits) and i know how i feel if i catch a little cold nowadays. I cannot imagine going back to that state of belly issues.

 

What are you doing for protien? Are you getting enough? What about all the other vitamin levels?

 

Such a raw diet can be very harsh on an overacting system. It is also very possible that you have a leaky gut.

EricaM15 Rookie

What are you doing for protien? Are you getting enough? What about all the other vitamin levels?

 

Such a raw diet can be very harsh on an overacting system. It is also very possible that you have a leaky gut.

 

I have a lot of nuts and seeds for protein. I'm sure I'm getting enough protein. As for vitamin levels, I take a daily multivitamin along with a B-complex vitamin and a high dose of Biotin, which was recommended by my endocrinologist to help with the PCOS symptoms.

 

I actually find that my stomach feels best after eating a large salad of green leafy vegetables. I'm sure I have leaky gut, but I don't think raw is the issue. I'm simply struggling with the lack of variety and too few calories. Everything (aside from my weight) seems pretty stable when I limit myself to a diet of fruits, vegetables, nuts and seeds.

dilettantesteph Collaborator

Most of the beans that I have come across are processed on lines that also process wheat.  That can be the case with other foods too.  Have you considered gluten cross contamination as a source of your problems rather than food intolerances?  Keeping a food/symptom journal is very helpful in either case.  It can take a week to notice a reaction to a new food so you need to try to limit changes in your diet.  To consider cc issues, you need to keep track of sources of food and not just the food itself.  You can carefully source your foods by looking at labels for the "processed in a facility that also processes..." statement.  That statement is voluntary, so if you don't see it, that doesn't mean that the items are not "processed in a facility..."  At that point you can search here to see what people say, search the companies website, or make phone calls.

 

I hope you feel better soon.  It took me awhile at first to heal and figure out my diet.

JNBunnie1 Community Regular

If it's lactose intolerance that's removed your dairy, maybe try goat milk products? I'd give yourself

a few weeks on your 'safe' diet and then see if you can tolerate a little goat cheese. Also, any

reason to be avoiding eggs?

EricaM15 Rookie

Most of the beans that I have come across are processed on lines that also process wheat.  That can be the case with other foods too.  Have you considered gluten cross contamination as a source of your problems rather than food intolerances?  Keeping a food/symptom journal is very helpful in either case.  It can take a week to notice a reaction to a new food so you need to try to limit changes in your diet.  To consider cc issues, you need to keep track of sources of food and not just the food itself.  You can carefully source your foods by looking at labels for the "processed in a facility that also processes..." statement.  That statement is voluntary, so if you don't see it, that doesn't mean that the items are not "processed in a facility..."  At that point you can search here to see what people say, search the companies website, or make phone calls.

 

I hope you feel better soon.  It took me awhile at first to heal and figure out my diet.

I've never really given cross contamination much consideration. I generally just assume any reaction is the result of an intolerance because of how strongly I experience the reactions. At this point, I think I need to give my body a rest again for a while before I try reintroducing foods again. I'll definitely keep cross-contamination in mind next time. I don't keep a food journal, but I'm very good at keeping track of the things I've eaten with just my memory. I just have an unusually good memory. It's also easy for me to remember what I've eaten throughout each day now that my diet has become so limited.

 

 

If it's lactose intolerance that's removed your dairy, maybe try goat milk products? I'd give yourself

a few weeks on your 'safe' diet and then see if you can tolerate a little goat cheese. Also, any

reason to be avoiding eggs?

 

I've tried lactose-free dairy products, and it seems to cause me the same problems as products with lactose, except I get a delayed reaction instead of one that's immediate. I don't eat eggs because they have bothered my stomach for as long as I can remember. I used to eat them occasionally when I was younger, even during the time I was only a vegetarian, and it never ended well. I've tried eggwhites as well and it's not any better. I'm not sure about fish, but I can't afford it either way.

JNBunnie1 Community Regular

Given that you've tried lactose free products and still have issues, it's likely an intolerance of

the protein in cow's milk, called casein, that's affecting you. The advice to try a little goat's

milk still holds, although if you're worried about the cost of fish, then the cost of goat's milk

products will be fairly high for you as well. Perhaps a fairly inexpensive hemp protein powder

for the calories? You could throw a bit here and there into those smoothies.

 

Definitely start being more vigilant about cross-contamination. That's frequently the culprit

with people who feel better for a while and then feel worse again. You might also try getting

some coconut products into your diet, especially coconut oil. You could even make homemade

raw or cooked granola with your nuts and seeds. As with anything, give yourself a few weeks

on your safe diet before trying, and only try one new thing at a time.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    2. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      GI DX celiac despite neg serology and no biopsy

    3. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy

    5. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,472
    • Most Online (within 30 mins)
      7,748

    kygirlsusan
    Newest Member
    kygirlsusan
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.