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Feeling Overwhelmed


Raulny

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Raulny Newbie

I recently had a positive blood test result and I am awaiting my biopsy results. I have spent the last month cursing my GI doctor for making me wait a month for an endoscopy. He wanted me to have a colonoscopy first then the endoscopy. Part of the problem was that I have never eaten a lot of gluten, maybe three pieces of bread a week or less, so my first blood test came back a weak positive 25 on the Gliadian AB IGA test. Then I had the colonoscopy and another blood test, this time the Gliadian AB IGA test came back a strong positive +41 but the other three tests came back negative. I ate one piece of bread a day. Anyhow, my symptoms have gotten worse everyday, at first it was bloating and a lot of gas, and then constipation interrupted by diarrhea, then diarrhea all day and at night. I have had lower body aches, congestion, dizziness, and lots of hunger, slight vomiting, stomach ach, and fatigue. These symptoms seemed worse when I had lamb or other red meats. Originally I went to my doctor because I was having constipation and sudden diarrhea attacks (running to the bathroom events).

It seems to me that I have a gluten intolerance and maybe celiac disease. In any case I pretty much have decided that I am giving up gluten. I have few questions, first I am worried that maybe I may have some other problem and second, I went today to Whole Foods and although I found gluten free foods, I had hard time finding things I liked. I am also lactose intolerant (self diagnosed) and after reading some of the posts I am wondering if I should get a milk allergy test. Another question I have is that I noticed that labeling is not consistent. Since my biopsy I have stopped eating gluten I feel slightly better. Feeling overwhelmed.


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KaitiUSA Enthusiast

Sounds like gluten is an issue for you.

I had the same problem as you at first. There was a lot of crappy tasting gluten free stuff and I was like o great I am going to have to eat this my whole life.

After a while, you will learn there are alot of good gluten free brands that are good it is just a matter of finding them. This site will definitely help you out on things to try.

Here are a few great tasting gluten free foods:

-Tinkyada pasta is loved by an overwhelming majority of people. It tastes normal

-Wellshire Farms Chicken Bites-fully breaded and taste like normal ones if you ask me

-Foods By George cinnamon english muffins

-Cybros rice rolls

-Kinnikinnick donuts/breads

Believe it or not we can also have alot of mainstream brands of food still. There is a list of brands that will list wheat,rye,barley,oats on the label or they will be safe-they do not hide anything even under otherwise questionable ingredients. This saves us a lot of time since alot of ingredients can hide gluten.

Also, the list of safe and forbidden ingredients and foods would help you. Here is the link if you do not have it. https://www.celiac.com/st_main.html?p_catid=12

Feel free to email me if you need any help... I am sure this site will give you tons of info. People on here are so supportive and knowledgable. It definitely gets easier as you go and it will become a normal way of life.

Also, a biopsy can rule celiac in but can not rule it out. The doctor could miss damage if it is sporadic or there may be no damage yet if its in beginning stages. So you may still have it even if the biopsy shows negative.

Raulny Newbie

Thank you for all your advice. I think I was having a little breakdown. I will use all your information.

:D

nettiebeads Apprentice

It seems to me that I have a gluten intolerance and maybe celiac disease. In any case I pretty much have decided that I am giving up gluten. I have few questions, first I am worried that maybe I may have some other problem and second, I went today to Whole Foods and although I found gluten free foods, I had hard time finding things I liked. I am also lactose intolerant (self diagnosed) and after reading some of the posts I am wondering if I should get a milk allergy test. Another question I have is that I noticed that labeling is not consistent. Since my biopsy I have stopped eating gluten I feel slightly better. Feeling overwhelmed.

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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. 
    • trents
      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.
    • 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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