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Thoughts on my first few weeks gluten free


Bananasbananas

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Bananasbananas Apprentice

Hi again everyone. I’ve been gluten free for 27 days now, and was officially dx late March with celiac. I received the diagnosis from a nurse over the phone, and my follow up isn’t til late June. I’ve been doing pretty well with everything but have so many questions. 

When I got my blood work back in December, I upped my gluten intake quite a bit— last time having all my favorite Christmas cookies, special holiday beers etc. I developed a really itchy rash around my mouth and nose bilaterally, which is still kicking around. Should I have this checked by a dermatologist or give it some more time to potentially respond to the gluten-free diet?

At the same time in December, I really relaxed my workout regimen. I have felt for a few years now that I’ve been making less progress than the effort I was putting in. My iron has been an issue since early childhood, and I’ve been on supplements but it doesn’t make much difference. Now that I’m on the diet, I am trying to get back into a workout routine, but I’m left feeling very achy and fatigued after. So I’m wondering if I should just keep taking it easy and hold off on higher intensity workouts? 

The last thing I’ve really been struggling with is brain fog. I have an intellectually demanding job, and even the most basic words can be tough for me to recall. My focus has been terrible. Outside of work, I find myself starting different projects and never completing them, jumping from one hobby to the next in quick succession. On top of that, I’ve been pretty emotional and feeling like I just do not know how to properly care for myself. I feel like a complete space case. Are there supplements I could take to remedy this?

sorry in advance for the long post. It is so nice to have this forum to seek advice. My family has been supportive, but they usually just say “it’ll get better, you’re doing your best..” etc without really knowing how to help. And I’m really eager to get back to my doctor, but he is a gastroenterologist and really only seemed interested in my GI symptoms the first time around.


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kareng Grand Master
21 minutes ago, Bananasbananas said:

Hi again everyone. I’ve been gluten free for 27 days now, and was officially dx late May with celiac. I received the diagnosis from a nurse over the phone, and my follow up isn’t til late June. I’ve been doing pretty well with everything but have so many questions. 

When I got my blood work back in December, I upped my gluten intake quite a bit— last time having all my favorite Christmas cookies, special holiday beers etc. I developed a really itchy rash around my mouth and nose bilaterally, which is still kicking around. Should I have this checked by a dermatologist or give it some more time to potentially respond to the gluten-free diet?

At the same time in December, I really relaxed my workout regimen. I have felt for a few years now that I’ve been making less progress than the effort I was putting in. My iron has been an issue since early childhood, and I’ve been on supplements but it doesn’t make much difference. Now that I’m on the diet, I am trying to get back into a workout routine, but I’m left feeling very achy and fatigued after. So I’m wondering if I should just keep taking it easy and hold off on higher intensity workouts? 

The last thing I’ve really been struggling with is brain fog. I have an intellectually demanding job, and even the most basic words can be tough for me to recall. My focus has been terrible. Outside of work, I find myself starting different projects and never completing them, jumping from one hobby to the next in quick succession. On top of that, I’ve been pretty emotional and feeling like I just do not know how to properly care for myself. I feel like a complete space case. Are there supplements I could take to remedy this?

sorry in advance for the long post. It is so nice to have this forum to seek advice. My family has been supportive, but they usually just say “it’ll get better, you’re doing your best..” etc without really knowing how to help. And I’m really eager to get back to my doctor, but he is a gastroenterologist and really only seemed interested in my GI symptoms the first time around.

If you have waited a whole year to go gluten-free - being diagnosed last May- it is going to take longer than a month to feel better.  You spent a whole year knowingly hurting yourself.

Bananasbananas Apprentice
4 minutes ago, kareng said:

If you have waited a whole year to go gluten-free - being diagnosed last May- it is going to take longer than a month to feel better.  You spent a whole year knowingly hurting yourself.

And there’s that brain fog. I went gluten-free the day of my biopsy. The doctor said to keep eating gluten up until then even though we knew it was damaging based on the blood work.

Ennis-TX Grand Master

Read the newbie 101 make sure your doing everything right, removing diary and oats is normally suggested for the first few months. Also make sure you threw out contaminated scratched pots, crumbed condiment jars, cutting boards etc.
https://www.celiac.com/forums/topic/91878-newbie-info-101/

To help with the fog try this combo, Liquid Health Stress & Energy, and Liquid Health Neurological Support 1 tbsp each 3 times a day. Also to help with fatigue and brain issues you need to take magnesium which is a common issue with this disease, here depending on your bowl habits depends on what you need. If you have constipation then Natural Vitality Calm, take 1/4tsp (1-2g) at first and up it every day 1/4tsp (1-2g) to the full dose or til you get loose stools then back it back down dosing to tolerance. If you have normal daily bowl movements get Doctors Best Magnesium powder and take as suggested, night works best.
Iron, to help absorption you have to take it with vitamin C other wise your going to have more issues, topped with damaged gut and body constantly healing you need the help.

I use Vegan Protein Powders like Jarrow Pumpkin, Naked Pea, Growing naturals pea, Julian Bakery Pegan (both plain which is sancha inchi, and the cinnamon twist which is pumpkin), MRM Veggie elite etc all of which are high iron, magnesium, etc and great for working out, recovery. It took the first 2 years of healing before I started being able to step up my work out regime....I am now body building and working out most of the week. I personally follow a Paleo/Keto diet to manage other conditions and it keeps a lean and muscular build sustainable due to the higher protein, fats, and iron intakes and this disease.

Zinc might also be needed, which you can get in lozenges...if the lozenges taste like metal then your good, your body lets you know by the taste if it needs it or not.

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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