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Help, Please


sputnik1

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sputnik1 Newbie

Hello. I know this discussion is over 3 years old, but I JUST found it and really need some help. I am a VERY active 30 year old. About 5 years ago I've started having these "episodes" of ridiculous fatigue, puffy face (under eyes), muscle cramps, distended stomach, gas and constipation. This coincided with me finding out I had HSV2 and I was blaming everything on that virus. I've now been on medication since forever and these fatigue episodes have continued. they come and go as they please, sometimes days, sometimes weeks and a few times as long as a month. If I try to push myself and workout while being derailed, I get acid reflex. I've been told it's depression, it's all in my head, i am overworked, over workedout.... but i know it to not be true. because after being ill for a week, i'll wake up one day and all will be normal and i'll be able to play soccer for 2 hours again - no problem. 

 

i've noticed that i get this when i stress or when i drink beer (even just A beer, i almost never drink) or eat some carbs or some sweet stuff. I've looked into cadida and been taking good probiotics to no avail.

 

I eat really healthy, no fast food, no carbs. but if i do eat something "off" or drink a beer.... ohhh here it comes, it's like i get hit by a truck and off i go, my brains fogs up and i lose any motivation for anything.

 

it appears that the posters here have similar problems, yet going gluten free hasn't really helped them. so what is the solution then ? it's been 7 years....


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peanutbutterandjelly Newbie

Go and get bloods done, and go from there. While it might not help everyone, it might just help you :) Worth a shot to stop feeling this way, yeah? I know for me it is, just waiting on an endoscopy to officially diagnose/confirm, CAN NOT WAIT to start gluten-free!

mushroom Proficient

Have you ever been truly gluten free in 7 years?  It doesn't take much to keep the autoantibody factory in production, and one lapse (like a regular -- non gluten-free - beer) can start up a new, more active production line.  So before you say it is not gluten, you must be truly gluten free, OCD almost in being gluten free and avoiding cross-contamination (which comes from something as simple as taking croutons off the salad and then eating the salad!).  Give it a good strict trial, drink Redbridge or Bard's Ale or similar gluten free beer, and see how you feel when you are truly gluten free.

kareng Grand Master

Hello. I know this discussion is over 3 years old, but I JUST found it and really need some help. ....

I split this into its own topic as I felt that would be more helpful.

sputnik1 Newbie

One other "distinguishing" symptom is i get these tiny tiny bumps (sores ?!) on the inside of my bottom part of mouth not on lip, but from lip down. they come and go at times and only stay for a few hours, but i can't even see them in mirror they are so small, yet i feel them very much with my tongue. they are not 100% present for the time all the fatigue lasts, but they ONLY show up when i have this.

 

i'll do the gluten free, no doubt. However, what i was saying is that the member that had 100% of my symptoms also went gluten free and yet says his/her symptoms come out from time to time

mushroom Proficient

You mention posters having similar problems and gluten free not helping, but I can't find which posters you are referring to.  This must have come from the splitting of the topic, I guess.  So perhaps you can remind us.  Most people notice some difference when eating gluten free; very few have no changes unless they do not wait long enough for changes to occur.

sputnik1 Newbie

Hey Mushroom, yeah the topic was indeed split, sicne the original post was last update 3 years ago. but people there seem to share 100% of my symptoms. the damn CRAVING is my biggest downfall. I am not hungry and yet all i want is sugar and carbs. it's crazy. i fight and fight with myself and lose everytime to sweets. I'll go take out money from ATM just to go to vending machine and buy a King Size Snickers and this is coming from a guy that eats home made soup and buckwheat as 80% of the diet on normal days.

 

I doubt this gluten reaction because if something is BAD for you, why would the body keep craving it.

 

original post this way: yumummymy is the poster

https://www.celiac.com/forums/topic/57102-tiredfuzzy-swollenbloated-but-no-stomach-distress/


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mushroom Proficient

You think heroin is good for heroin addicts or alcohol is good for alcoholics? :ph34r:   Stuff becomes bad for you because you crave it and consume too darned much of it.  Sure sign of addiction.  We always become addicted to the stuff that's bad for us.  Lay off it :ph34r:   Go back to buckwheat and soup and feel better :)

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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
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • 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.
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      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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