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Symptoms Need Input

chasefamily

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chasefamily Rookie
chasefamily
Posted

Hello. I was just diagnosed as possibley having celiace disease. I'm not sure what do i do about it and what are some of the problems associated with this disease, what symptoms?

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chasefamily Rookie
chasefamily
  • Author
Posted

Hi has anybody experience severe bruising and anemia with celiac disease I also get tired alot.

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flagbabyds Collaborator
flagbabyds
Posted

Fatigue is the #1 sympton of celiac disease. Anemia is right up there too. If your villi are damaged then you are not absorbing all the iron and other supplements.

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Guest jhmom
Guest jhmom
Posted

Chasefamily, Hi and welcome. :) The first thing to do when you are diagnosed with Celiac is immediately begin a gluten-free diet and stick to it for the rest of your life. That is the only way the symptoms will stop and your body will begin to heal. WHen and how were you diagnosed? Have you started a gluten-free diet yet? It is hard in the beginning but it does get easier, I promise!

Most people have the common GI probs such as:

diarrhea

nausea

weight loss

abdominal pain

cramps

etc...

and yes anemia can be a symptom too for some people. I personally do not have a problem with anemia but I have always bruised easily. Maybe someone else will be along soon to answer your questions.

Here is a link about Celiac symptoms:

Symptoms of Celiac

Here are some other helpful links:

Safe & Forbidden Food & Ingredient Lists for Gluten-Free Diet

Open Original Shared Link

Open Original Shared Link

This is a post that one of our members started (thank you Jessica), which has a TON of links with great information, I thought you may want to look through them!

Open Original Shared Link

I hope this helps you :rolleyes:

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chasefamily Rookie
chasefamily
  • Author
Posted

thanks for the quick reply. I have been to several doctors over the last few years for multiple problems. I see a hemotologists regulary for Essential thrombytosis and low ferritin level, plus severe bruising, I have been going ther since 1997, I was having bleeding problems and had to have emergency hysterectomy because I wouldn;t stop bleeding ever since that I have had problems with my iron count and have been on and off of iron medication since 97 but still bruise alot and always tired, I reciently went to a GI doctor for acid reflux problems and food coming back into my esophagus and he is the one who thought I might have celiac disease after reading all of my medical info. I am scheduled to have endoscopy the end of this moneth but he did not tell me to start a gluten free diet yet?

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judy04 Rookie
judy04
Posted

Hi Chase family and welcome!

I would advise you not to go gluten free until the

Endoscopy is done. If you start to eat gluten

free now it will affect your biopsy and blood

test. Have you had the blood test yet? My

GI doc did a celiac panel, I tested Neg for

the gene but positive for the IgA (75). I was

retested in 6 mos, my level is still somewhat

elevated. My doc said to try foods again one

by one to see how I react, I did this but

found I still cannot tolerate wheat or dairy.

My advice to you is to keep a journal of

what you consume as you will probably have

some "gluten accidents" from time to time.

Try to learn as much as you can about

this disease because my doc told me to

avoid wheat, rye, oats, and distilled vinegar!(DUH)

Get in the habit of readin all the labels, at first

it seems overwhelming. Try to come to this website

every day. There are plenty of people ready

to help you. Hope this helps.

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    • trents
      Waiting for urgent referral.

      By trents · Posted

      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
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      By Zackery Brian · Posted

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    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      Joint swelling when ill even on gluten-free diet

      By knitty kitty · Posted

      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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